medulloblastoma

Looking for information?  Medulloblastoma is not always the death sentence it once was. Read Mason's blog for updates on a happy boy, diagnosed with standard-risk medulloblastoma in Nov. 2010. 

my nephew masey has medulloblastoma. in case anyone reading this blog already does not know :) i guess i might be able to say had medulloblastoma. most of the things he's suffering with now are secondary to that beast of a cancer with the beastly name.

i've got so many thoughts about it, and i just need to share. if you want an update on him, his blog is always the best place. (he's doing very well currently, all things considered) after the last post i made, though, i decided to research myself. maybe it was a mistake. maybe i didn't really want to hear horror stories of cancer that comes back (medulloblastoma that reoccurs is typically terminal) or see awful pictures of the side effects from the chemo/radiation. maybe i didn't want to see statistics and hear the stories of kids who lost their fights with medulloblastoma. maybe i did. i am not sure there is an actual answer.

the day masey was diagnosed, his sweet nurse in the picu encouraged us to take pictures of him. to document it for him when he gets older. he was going into brain surgery the following morining. i thought she was being insensitive. you see; deep down, i was convinced he would not make it through the surgery.

i just did not see how the big old doctor could stick his hands into masey's 3 year old brain, suck out a tumor and still have things go well. i had seen the massive tumor on the mri. i had watched as the doctor calmly scrolled through the pics and i saw the flip book of the massive tumor. i could not imagine how masey was even alive with that thing in his brain. i heard the doubt in the doctors voice, and sensed his dodging the question of what will come after surgery. he wasn't sure anything came after surgery for masey boy.

i did not have faith at all in the process masey was embarking on. but i also did not have the guts to say it out loud. though it goes against everything i firmly believe (that the Lord does not punish children for the mindless babble that others say) i thought i might jinx the surgery by voicing my doubts.

but he did make it, through two of those brain surgeries. and if we're gonna be specific, he made out like a bandit. some kids are not able to talk or walk or really even move for months on end. some kids need a shunt just to be able to regulate the pressure in their heads. some kids need weeks for their brains and bodies to recover from surgery. masey did not need any of these things. every time a doctor would come in to examine him, they would comment on how well he was doing. in fact, the day before leaving the hospital, when masey rode past his neurosurgeon on the physical therapy bike, the surgeon literally exclaimed with amazement. masey has weathered it all very well so far.

but what does that mean for the future? as much as i firmly believe that masey is a fighter and can kill this (anyone who has seen one of his tantrums or tried to argue with him knows he wins everything he tries) there is the looming fear in the back of my mind that everything can't go well all the time. masey already has side effects from the radiation and chemo. he doesn't eat. its a struggle to get him to drink. his jaw hurts him and he is getting more clumsy. but those seem so small compared to the monsters i see in my mind. i feel like i am hoping for the best, but  bracing for the moment when the floor drops out from under us.

i am very grateful for masey's sweet picu nurse, jodi. her suggestion to document his treatment was heaven sent. every once in a while, masey will ask to look at his scar, or to see his birthday party. having pictures to show him has helped him so far, and i imagine one day, when he has a little boy of his own, he'll want to show his family a record of this amazing journey, and proof of the miracle we've witnessed firsthand.

any time i think about keeping a record or documenting or journaling, i thought of my sweet grandmother. in the year 2000, she started writing a weekly newsletter to her family, at first just her children but soon for many more family members and friends. she called it meanwhile, back at the ranch (i think after some line in a western. maybe a famous line from gunsmoke) it was the blog of 10 years ago, and served as her journal for the 7 years she wrote it. during the last 18 months of her newsletter, it served as a record of her fight with leukemia.

grandma always had a soft spot in her heart for masey. he was the only baby she'd ever seen born. she watched masey enter this world just a few months before she departed it. a few months ago, my sister began re-posting my grandma's newsletters for the family to read. looking back, i find it fitting that she had done that, as my grandma and masey share a very special bond beyond masey's birth. they both had cancer. the only difference is one was at the ending of a life and one at the beginning.

did you know?

well, i have solidly refused to look up any statistics or information on masey's type of cancer, medulloblastoma. my sister is not quite as against it. in fact, she is way too curious to not read all she can about it. usually i am that person, who sucks up information in the hopes that it will make a difference. i'm not sure why we've traded places. but, here is a short list of stats my sister put together. just a few did you knows, because you might have noticed the pretty new buttons on the right of my blog.

that's what i'm here for

well, my sister pene and i each have lots of strengths. unfortunately, few of our strengths overlap. i am great at expressing myself either through writing or conversation (arguing:) she is great at expressing herself through music, singing and photography. i am great at getting people to give me what i want, she is great at getting what she wants herself. i am great at winging things and never planning, she has the plans and lists down. two sides of the same gene pool.

since masey has been sick, it's been pretty useful. the doctors will come to talk to pene, and she and i literally hear two different conversations. i completely tune out things my mind does not see as important (i like to think it's the fluffy stuff) while she tunes out details. we will talk about a doctor visit after the fact and marvel that we both were present for the same conversation.

but, it helps eliminate the gaps in the information we are given. i am good at being the bad guy. when nurses are not doing something correctly, i am the nervy one who will confront them on it. when something needs to be done and isn't, it is me that finds the nurse and gets her to do it now. pene is good at gaining the compassion and dedication of the nursing staff. i am great at interrupting doctors to ask the questions that pene will not, or has forgotten. she is great at listening and taking care of mason during these visits. i am good at understanding what information a vague question is wanting and only giving that much. pene is good at giving the full picture. i am good at waking up with 5 minutes till we leave, hoping i have proper clothing on and going to masey's radiation appointments. pene is great at packing each item and knowing where and how many of each item she packed.

we always joke that there are some things that are just what i'm here for. i am here to ask the questions, manipulate people into giving us the things we want, and most importantly, make sure masey has what he needs. when masey had a horrific experience at the doctors, i knew that it was my job to hunt down the proper channels to get our problem solved, and let everyone possible know how enraged we were about it. i did not need to be told to allow my righteous fury to fix the problem. it was just understood. pene had the task of comforting masey and reassuring him that it would never happen again, as well as planning out the long-term battle plan. i got to let my anger out immediately, and argue any medical professional up to the challenge into a nice little corner. both things that fit our personalities perfectly.

despite our different personalities and strengths, it has been so nice spending tons of time not only with masey but pene, also. we did not always get along well (i guess at all!) especially when we were little. but, spending time with her lately has allowed me to appreciate the many strengths she brings to the table, and the amazing mom she is.

say it louder!

this summer, i remember one sunday where i was sitting in sacrament meeting at church with masey. he was being loud and disruptive. i whispered some sort of bribe in his ear. i'm sure it went something like if you're quiet, i will give you candy after church. well, mason did not care for the bribe. he continued on, ignoring that i had said anything to him. a few seconds later, i whispered a higher-level bribe. probably something like if you're quiet during church, i'll buy you a train. again, it was ignored. i tried the trump bribe, if you are quiet we will go to auntie lia's house after church. this got a response, but not the one i wanted.


say it louder! mason said.
you need to whisper in church, i reminded him.
say it louder! was his reply, but this time he was full-on yelling, and turned to look at me.
you'd better whisper in church or i'm going to throw away all your trains. was my reply.

the reply that got was sobbing. i ended up taking him out of sacrament meeting because he was being so loud. i had to console him that no, i wouldn't really throw away all his trains. we didn't make it back into sacrament that day, and i walked away from the situation extremely annoyed with masey. i was so happy to hand him off to his mom.

a few weeks later, we found out that masey is profoundly deaf in his right ear. the ear i was whispering in. the ear i got so angry he did not respond to me from. i felt like a horrible person for being so mad at him for something he couldn't help. the moment i was told about him being deaf, i immediately thought of the incident in church. it made such great sense now.

halloween day found me having just played a rugby game. (i guess i should call it mormon halloween. it was the day before halloween, which fell on a sunday this year) pene had left to take care of her calling, and it was my job to get masey ready for the trunk-or-treat. i thought it would be simple, he was so excited to wear his iron man costume. but he refused. flat-out, throw-a-tantrum, screaming and yelling refused. he said he was too tired, and too sick to go. over and over, but i continued to push it and refused to listen. eventually, at the direction of my mom, i left him alone and walked away from the situation.

4 days later, masey went in for an mri that would change his life forever. suddenly, like that fateful sunday, the happenings on halloween made sense. masey had a brain tumor. all of these symptoms made sense. the guilt i feel, knowing that i gave him such a hard time for stuff he couldn't help is sometimes unbearable. the only bright point is that masey does not remember either day. luckily for me, i am still his auntie latu and i can do no wrong.

one perfect bubble

well, this is going to be the boring, lots of info paragraph. for the story, read after the picture :) tonight i volunteered at the 40th anniversary of the festival of trees. the festival of trees is kinda just what it sounds like. people or businesses donate trees, which are auctioned off. every penny made (by admission, buying trees, food or crafts) goes to primary childrens medical center, and families that cannot afford treatment. i worked at the sweet shop and sold candies, chocolates, pretzels, cookies and brownies to the visitors. tonight was a great night to work because it was the auction night and not too busy, so i was able to take a lot of breaks and see the trees. most trees are dedicated to someone and some trees offer explanations of the person's struggles or life story.

one, called one perfect bubble really stuck out to me.  it was simple as trees at the festival go. it was adorned with a few green, shiny ornaments and lots of clear glass balls. the picture of the baby had a bubble coming out of its mouth, which i thought was cute. it wasn't until i read the bio information that the full power of the tree hit me.

this tree was dedicated to a sweet baby boy. he had a disorder called trisomy 18, something that is close to my heart because i know someone who has fought her way out of her teens with trisomy 18. she has lived decades longer than doctors ever imagined. this friend's parents were told that she would not live more than days, the same thing the boy from the tree was told.

thats about when their stories separate. my friend's story is one of a years-long struggle and fight, defying all the odds. the little boy's story was an hour-long tale. his prognosis was not good, so throughout the last part of the pregnancy, his parents prayed fervently for just one hour with their baby. their righteous desire was granted, and they spent one hour with their sweet boy before his spirit left this earth. throughout the hour he was here, he blew bubbles from his mouth. one of those bubbles was the one in the picture that had caught my eye.

reading all of the plaques and stories of these small children and babies made me incredibly thankful for masey being here. it made me thankful for competent doctors who know what they are doing. mostly, though, it made me grateful for the countless families and kids who have gone before. those nameless people who we constantly hear about. we never hear names or even specifics. usually its not entirely clear we are hearing about people. but we hear about treatments that work better than others, side effects to look out for, and information about how masey's type of tumor behaves. all of that boils down to hundreds if not thousands of little boys, just like mason, just as beloved by their families, and just as precious, who have gone before. who have paved the way for mason today. i pray for those sweet kids and for their families, and am hugging my masey even tighter tonight.

this little boy

is doing so well! my sister took this picture, and i couldn't help but post it. a lot of the time, i worry about him, i worry that he is not recovering quickly enough, that he's not quite himself. but this picture speaks volumes about how well he is doing. auntie loves you, masey!!

come, ye thankful people, come

well, this year i have a lot to be thankful for, and most of the things i am most thankful for are things i took for granted prior.

the big and obvious ones are my family. i am so grateful for their love, their support, and just for them. i am grateful for sila boy, who constantly is in a great mood and is the perfect baby. i am grateful for the princess, who  always says her mind and loves her brothers fiercely. i am grateful for masey boy, who is fighting cancer and a great example to all of us of how to be in a horrible situation but not lose your manners or your humanity. i am grateful for mo, who loves everyone so much he doesn't even know what to do with it. i am grateful for my angel niece, lile and the motivation to be good she provides me with her quiet presence.

i am grateful for baby darl, who worries about everything and everyone and is never anything but caring and thoughtful; he does what he feels he should no matter what. i am grateful for pene, the best mommy to a sick little boy and example of strength to me. i am grateful for vili and his unwavering testimony, example of the savior's love, and for his undying friendship. i am grateful for sila, the brother who has few words for me but i always know is my #1 defender. i am grateful for tevita and the provider and worthy priesthood holder/father he is to my sister and their children. i am grateful for talia and her friendship, guidance and even-keeled advice. i am grateful for edgar, the brother i have never met and do not know, but have been mindful of lately.

i am grateful for my mother, who is a great example of hard work, determination and sacrifice. i am grateful for my father who is my favorite critic and an example of strength mixed with love. i am grateful for my dear, departed grandmother jenna lee and the shoulder to cry on and advice i still hear her giving me. i am grateful for my grandfather darl, for always being there to support, offer advice and counsel and be an example of gospel living.

i am grateful for my many aunts and uncles. they have a bigger impact on my life than they know, whether it is sheltering a lost little girl; being a friend and confidante; or thoughtfully noticing a problem and striving to fix it. they are examples of pure love and family. i am grateful for the cousins i can confidently call friends, who lend their support and love from miles and miles away.

i am grateful that i am an american citizen. it is a huge blessing to be able to walk into any place of business and qualify for a job. i am grateful that i have a car to drive me to the places i need to be, and places i need to be.

i am grateful for friendship. i have never truly cherished friends until this year.

i am grateful to have the gospel in my life. i am truly grateful for agency, the atonement and the miracle of forgiveness. i have partaken of it more than i would like, but it is a blessing and i am grateful it is there for the taking. i am grateful for the power of the priesthood and the miracles i have witnessed through it.

i am grateful for the gift of working ears. i experienced total silence the other day, and it was unnerving. i had no point of reference for the things i was seeing and knew should be hearing.

i am grateful for chairs that do not rock. i realized at the hospital that if i am in a rocking chair, i will subconsciously rock it and make myself nauseous.

i am grateful that snow-pocalypse was not nearly as bad as predicted, at least here in orem. i was repenting like crazy on the drive home last night!

i am grateful for blogging and the ability it gives me to keep a semi-faithful record of my life. i am grateful that it is an outlet i enjoy, and i can type as much or little as i like (obviously, today i like a lot :)

i am grateful for facebook (no, this will not be like the girl i heard bear her testimony of myspace, as she met her fiancee there) and the ability it gives me to keep in contact not only with random people i have not seen, or cared to see for years, but my family that is scattered throughout the world. when i wanted people to fast and/or pray for masey's brain surgeries, facebook was there. when i did not want to update the entire world one-by-one on his status, facebook was there.

i am grateful for primary childrens medical center, a place where miracles happen. i am particularly grateful for a neurosurgeon named dr. jay riva-cambrin. i joke that he is over-confident or cocky, but the reality is that without him, my masey would not be here. he truly performed a miracle in masey, and i am eternally grateful for him and his meticulousness and thoroughness, as well as his willingness to accept the challenge of masey's surgery in the first place. i really can't say enough good about this man, but if i ever find myself in need of a pediatric neurosurgeon again, you bet i'll be tracking down dr. riva-cambrin.

i am grateful for letters. there is nothing quite as nice as getting mail that is not a bill or junk.

well, i could obviously go on forever (letters? seriously!  that made the list??) but i'll stop now. suffice it to say that i am really looking forward to thanksgiving, and i am a grateful, happy girl!

the first family picture we've had in years. i know, ridiculous that it takes that long to get 9 adults and 4 kids together...especially cause i just remembered that one of us is shopped in. :)

dreams

this post is not about masey. wow, that feels so weird to type! he is at home now, and doing so so well!  read his blog for an update

this post is about me. it's also about one of my best friends in the entire world. it's also about one of my fondest dreams.

the story i am going to tell is not one i share with people. ever. in fact, it's one that i usually try my best to hide. it's something that my subconscious mind thinks of as shameful. it's something that i am sharing because it just feels like the time...

best friends are a tricky thing. everyone needs them, but by having them, we open ourselves up to get really hurt. people who know us the best also know what low blows can be said in a fight that will hurt the most. i had one of those fights tonight, and it was not a fun thing. i guess i should start a bit farther back though.

i have always loved children. since i can remember, i have wanted at least 10 kids. more if possible! i wanted my kids to have lots of siblings, and to all be close in age so they would always have playmates and friends. i planned names for them, practiced with the neighborhood kids and any other child/baby i could get my hands on!

that all changed when i was 16, though. i received the most devastating medical diagnosis i could imagine. i was told i would not be able to have children, and if by some miracle i did, it would only be through intense infertility treatments. not only was it incredibly devastating to me. it also seemed shameful. something i was terrified people might find out about me. a stigma i did not want.

i knew that the diagnosis left the possibility for children through infertility treatments. but i also knew it did not leave the possibility for 10 or 11 or 12. i got tunnel vision and could only think about the first half of the diagnosis. as far as i was concerned, i could not have children. my world had ended, and i fell into a deep depression. i did not recognize it at the time, but looking back on my life, i see the path depression left. my grades and attendance plummeted. my relationship with my family suffered. i ended up dropping out of high school the week of graduation. i was too busy feeling sorry for myself and being angry at the Lord to do anything, including finish high school.

i became a drop out statistic. i burned bridges with family and friends and did not care. i can't say i blame all these things on the diagnosis, and i cannot say that it is an excuse. but that is my story. or at least my side of it.

through this entire time, i did my best to not let anyone know about it. i did not tell my family, i did not tell my friends. i was ashamed--not only of the diagnosis, but of my behavior because of it.

now, i guess we can fast forward to current day. the depressive streak is past. i have chosen to focus more on the fact that children can be possible than that they most likely are not. the shame is past, though i still have not chosen to share this with many people.

what is not gone--but i wish was--are the fears. the ones that lurk in the back of my mind in a quiet room. the ones that go the deepest. the ones that say i will never have kids. that i will never find an eternal companion. that not being able to have kids will never even be an issue, because i will never marry. those are the fears that were played on today by one of my best friends (who herself is a mom).

and it just felt so unfair.

miracle hospital

since masey has been at primary childrens medical center, i have been making a list of a few things i love about this hospital:

• they treat any child, regardless of their parents ability to pay, and with payment (or lack thereof) not factoring into treatment
• their motto, the child first and always
• the room service menu. there's no cart full of pre-made trays for the patients. it is an entire menu of food items the child can pick from. you simply call the number, and they ask what can i get for mason? then you order. an aide brings up his tray. you can order as much or as little as you like, as often as you like. when mason had special diet restrictions, they brought him a menu with only approved items, so he wasn't seeing things he couldn't have. many times, they have brought up a single banana or a cheese wedge. also, if we were eating something from the cafeteria he wanted, they would plate it up and bring him some
• slushie machines on every unit
• wednesdays, there is a hospital-wide bingo game. every kid gets a prize (last week it was a mr. potato head, this week a snoopy doll)
• xbox 360s in every room
• toy closets on every unit, and an enormous toy room on the 3rd floor
• an entire staff of kids crew volunteers who will play with your child, do a craft, keep them company if you leave, bring him toys, play with a sibling. 
• therapy dogs
• child life specialists, certified child psychologists who help not only understand procedures, but attend them with him and talk him through it; deal with homesickness, and conduct the best play therapy ever.
• laundry rooms for the parents with laundry soap provided
• sleep rooms for the parents
• visits from personal pets (mason's doggies) for terminal and long-term patients
• primary lessons at the bedside
• a quilt on every bed
• buddies, the dolls the child life people use to help mason understand all his tubes and wires. 
• the nurse who let him have no leeds on since yesterday because he told her he hated them and never wanted them again
• the nurse who fought to be our nurse because she loved masey so much
• the neurosurgeon who let mason have his catheter out and hour after surgery because he asked for it
• patient care techs who also serve as waitresses for the parents
• volunteers who bring a cart full of instruments round and make up silly songs with the kids
• the hospitality cart, brought round every morning full of doughnuts, coffee/cocoa, muffins, bagels, juice and fruit for the families
• music performers in the lobby almost every night-harp, piano, violin, classical guitar, cello, flute, viola-you name it, i've heard it.
• pene can sleep/lay with/cuddle with mason any time he wants
• nurses, aides and doctors who will still gladly work around the many balloons and decorations up from masey's birthday on monday

this is just a short list of the many things i love about this hospital. i have always felt good about pcmc, but having masey here, i am now a true believer in this place. miracles happen here all the time, and kids are healed. it's a sad place inevitably, but it's also a place of miracles; full of people who truly love kids.

december 1st-4th is the festival of trees here in utah. i encourage anyone in the area to come see the trees, or buy a tree if you are so inclined. we will be decorating a tree next year. and you can bet i'll be going to the festival this year, and every year after. every penny raised goes to pay for children whose parents cant afford treatment.

this is thomas, masey's buddy. yes, he has a drain in his head also. yes it is really stitched in just like his. yes, he does have a board on his wrist to immobilize it just like masey. yes, that is a real iv, put in with a real needle by masey. and yes, masey loves him. a lot.

there are some really awesome updates on masey's condition and length of stay, etc. but i've been banned from updating before pene. so, stay updated on http://masestumortales.blogspot.com/ or check back with me tomorrow :)

pay it forward

yesterday was masey's 4th birthday. he's such a big kid now, and still so brave. all day, he was grouchy. the nurses would talk to him and he wouldn't answer. he refused to cooperate with the physical therapists or anyone else who came in the room. i can't say i blame him, he was mad he was at the hospital for his birthday! he kept insisting that his birthday was tomorrow, because he's convinced he is going home tomorrow.

about 2 in the afternoon, we got a knock. we could tell it wasn't a hospital employee knock; very few of them ever knock and the ones who do tap the door then walk right in. this knock was loud and waited for a reply from us. it was refreshing!

on the other side of the door was the sweet girl two rooms down, G, and her dad. in her hands was an adorable stuffed dog and a bunch of balloons. her dad explained that it was G's birthday a few weeks ago, and she knows how sad it is to have a birthday in the hospital. so, she wanted to stop by with a gift. i could barely hold back the tears when they told us that. it was exactly what masey needed, to know that someone knows what it feels like. we quietly woke him up and hoped that he would be nice, and he did not disappoint! he was so gracious and happy that he had a dog. all night, he kept saying i love doggies. i love my doggie!

it was sweet, and not something she had to do. but it truly made a difference in masey's day. as i explained to him that G knows how sad it is to have your birthday at the hospital, i could see it click in his mind. he got it. i have felt since his second surgery that all of this can really benefit others beyond our family. i thought it would need to be something huge, but after meeting sweet G yesterday, i realize it's the small things that really count.

i hope masey grows up to be as sweet, thoughtful and kind as G, but i am sure he will not disappoint. he's a sweet kid already, and i've decided it is my role to help him always pay it forward.

scars

WARNING:  NOT ONLY AM I TYPING IN CAPS, BUT THIS POST HAS PICTURES OF SURGICAL SCARS. read on only if you wanna see em :) as a side note, the orangy, blood-looking stuff dried on his head is the iodine they cleaned it with, not blood.

also, my sister pene has started a blog for masey. it includes a counter on the right regarding his stitches, scars, etc. check it out.

so, every time i have worried during this process, things have turned out fine. i worried for masey's first surgery, and he ended up recovering very well. i worried about his drain, but same story. it has been basically the same story for every little and big event in this process. the most recent one is his second surgery.

i was not as nervous going in as i was for the first surgery. i knew what to expect in a brain surgery. i knew the time would not be as long as the first one. i knew the surgery itself was not as intense. i even knew (or maybe hoped) that the recovery would not be as long. they went in through another approach into masey's head and in the surgeon's words, were more successful than planned (and they planned for a lot!)

long story short, he is out of surgery, fine and recovering more quickly than from the first surgery. he's in a lot of pain, but it seems like the only real side effect is the awesome new scar on his head. i feel like if all he comes out of this with physically is a couple scars and maybe a shunt, we've hit the miracle jackpot.

well, this is a 4am post, and i'm kinda tired. it's too late to think of anything very profound, so i'll show you the pics.

here's the scar from his initial brain surgery:

and the second approach:

and both together:

and his vampire bite along with evd (drains fluid from his brain) and one of many screw holes:

chiefi

masey got a visit from a four-legged visitor last night. we received permission to have chiefi (either of our dogs, actually) come visit him. masey was in heaven. it was two hours in this entire week from hell that he was able to have a piece of home and forget about the hospital. as he went into surgery today, i was so happy that if nothing else, masey went in having full-on giggled last night. (he has not so much as cracked a smile since being here, and who can blame him)

right now, i am in the surgery waiting room. it is outpatient/inpatient. i remember now why i didn't want to wait here last time. this morning, the room was full of parents waiting for their kids. it's 11:49 and the room is only about a quarter full.  watching most of these people sit for 45 minutes to an hour and then recover for another hour before taking their child home is hard when i know we have hours of surgery, and days or weeks of recovery with masey.

usually, it is so easy to remember that there is always someone who has it worse. but right now, in this waiting room, i have to constantly remind myself to not feel sorry for myself or masey. to not compare my situation with someone else's. to be humble that masey might be blessed. to spend my energy praying and pleading for a miracle rather than concerned with anyone else.

you know you're my saving grace

i have started this blog post three times now (this is four) the first one was lost because my computer crashed. the rest just didn't say what i wanted them to. so, i am starting again from scratch.

i think this post is gonna be about my sister, penelope. she is so many things: talented, compassionate, creative, and most of all, an amazing mom. right now, she is laying in a hospital bed with a very sick three year old boy. she's playing him some of hers and his favorite songs. they are all good songs, but the one that sticks out is the one she passionately sang over and over to her sweet boy.

we've always been pretty big beyonce fans in our family. destiny's child was awesome, and beyonce never made a song we didn't like. however, it's common knowledge that penelope has the rights in our house to halo. she has loved it since it first came out, and as a result, her baby adores the song. he knows every word and sings along to it any time it comes on. its his mommy's song.

listening to her passionately sing that already emotional song put me over the edge today. my baby sister's baby is hurting. a lot. but so is my baby sister. its a hard process to watch; one that makes me feel helpless every day. i can't imagine the pain she is going through, watching her baby boy changing and suffering so much. through this all, she remains an example to me. still faithfully saying her prayers, watching uplifting movies about trials, and being there for her baby.

pene has always been the best mommy imaginable. she makes crafts with her baby. she plays fun games, sings songs and cooks with him. she takes him on walks and they go on adventures. they go hiking up the canyon and letter boxing. she takes him swimming and to visit family. she taught him to love the lord and love the scriptures. she sets the example of prayer and church attendance. when he is older, she is going to homeschool him. and i have no doubt he will remain the smartest kid i've ever met.

this sweet boy is waiting for his 2nd brain surgery in 8 days. it's scheduled for tomorrow. they want to try to get the tumor volume down below 1.5 cm3, decreasing the amount of radiation necessary to cure him. the hope is that he can be out of the picu by his 4th birthday on monday the 15th, and in for another surgery the monday following that. then, we've got about 10 more days until radiation starts. 5 days a week for 6 weeks. following that, we'll start 12 months of chemotherapy. i have never been happier that Christmas falls on a saturday. radiation on Christmas is just plain mean.

through this entire process, penelope's baby has been poked, prodded, and flat out hurt more than any child ever should. but he remains the polite, sweet boy we know. he's constantly thanking the nurses and throwing out you're welcomes to people who thank him for the blood sample he just cried over.

today, i was able to watch my sweet nephew sing along to one of his favorite songs, single ladies. his weak little body couldn't even keep his eyes open, but he was able to whisper the words. i know that he yearned to be able to hop up and sing/dance like he used to, but he made the best of it and sang his little heart out. it made me regret all the times he asked for single ladies, but i was too sick of it to play it again. it made me regret a lot of missed opportunities i had with my sweet nephew.

i am nervous about his surgery tomorrow. nervous that my sweet nephew might not be able to sing and dance to his favorite songs anymore. nervous that he will not recover as well from his second surgery. nervous that he will be still recovering over his birthday. but most of all nervous that my sweet baby sister might have to find a way to live without her baby.

it's only a 6 hour surgery max (i never thought that would seem short) and the surgeon is much more confident this time around. but it still worries me. brain surgery is brain surgery, and as the surgeon pointed out, there is still the possibility for stroke, permanent brain damage, massive blood loss and loss of motor skills and muscle control. all of those things scare me, but none of them scare me as much as not having this sweet boy in my life.

tomorrow will be another day full of prayers, fasting, and pleading for this sweet baby. a day full of keeping faith in the surgeon's trained hands. keeping faith in mason's immense strength. faith in his ability as a fighter. a day full of faith in the power of the priesthood, the Lord and His miracles.

the game of our lives

it seems like the story of my life lately is waiting. we waited for masey to go into surgery. waited for updates. waited for him to come out of surgery. waited for him to wake up. waited for him to move out of the icu. waited for him to start eating. still waiting for the pathology to come back. waiting for the final word on the treatment plan. waiting is the story of masey's poor life right now.

masey is doing really well. he has been up and taking wheelchair rides, directing us on those rides and getting projects out of the craft closet. he has been moving his neck on his own. he has been awake more and needing less pain medicine. but he is still waiting. he is waiting to go home. waiting for people to stop poking him. waiting for his head to hurt. waiting for visitors. waiting for the time when he can eat without throwing up. waiting to find out if he can go home for a few weeks before starting chemo. as many things as it seems like i am waiting for in this process, it is nothing in comparison to what masey is waiting for.

right now, masey is in the in-between phase. we were told that the magic number for chemo or radiation to start is 28 days post-op. so, we've got a while until the next huge step, but we are also without a final diagnosis, so we are stuck waiting. the waiting game does not seem that bad, though, with masey here. with this sweet boy around, none of the waiting matters. i would do it forever for moments like these:

night nurse

mason is my sister-son, or my nephew. either term works. mason lives with us. he is the sunshine in my day. i wait for the moment every day. the moment when i hear his little footsteps running up the stairs to yell my name and jump into my arms. good morning, auntie latu!  he yells. i'm hungry for saimini he will say, or is it ok if you share with me? eying my cereal. later in the afternoon, he will interrupt me with um, auntie latu? i have to tell you something. i love you! my masey is my buddy and by far the highlight of my day. he is the brightness of our entire house. and he has a brain tumor. i said it. it kind of feels liberating. i made it official by pronouncing it to the universe.

on thursday morning, masey went in for emergency brain surgery in what everyone assumed was a fools errand, to remove the tumor. amazingly, surgery went well. way better than the doctors expected it to. masey is also doing way better than the doctors expected him to. he is out of the picu (pediatric intensive care unit) and on the brain trauma unit. things are looking up every day for this kid.

within an hour of waking from the 11 hour brain surgery and having his breathing tube taken out, masey's personality was already shining through--he was requesting thomas the tank engine. it was such a relief to know that he is our same masey, and fighting like crazy to beat this. the doctors and nurses are all shocked at his progress. to be out of the picu not even 48 hours after surgery is amazing, and he continues to improve. he has not needed nearly as much morphine as expected. in fact, he has been refusing it. the nurses love his personality, and he is making an impression on everyone who walks into the room.

as i sit here, playing the role of night nurse, i just want to gush on and on about masey's progress. but i realize that none of that is relevant without the following knowledge: 


masey is the recipient of a miracle.

none of the neuro surgeons expected him to leave the o.r. alive. but here he is!  the fact that he is here is a testament to the power of prayer, the power of fasting, but most importantly, the power of the Lord. wednesday night and thursday morning, my world looked hopeless and bleak. i prayed and tried to have faith. i knew there was a God, and i knew he could spare my masey's life. but i was terrified that he would not. i was terrified that my masey would be stripped from my life. the thought was paralyzing.

but, the Lord is good, and it was not masey's time to leave. so, he was spared. now, as i sit next to his bed watching guard over the night, i am overwhelmed with gratitude. in times like this, you are forced to re-prioritize, to decide what is really important. is getting my hair cut really that important in the grand scheme of things? is the carton of eggs mason broke onto the floor, trying to cook really that big of a deal? how about family prayer and church? family home evening? school? rugby? there are so many things i am now reconsidering. so many things that seem frivolous. so so many that need more attention and priority.

i need to be a better auntie, sister, daughter, and friend. i need to devote more time to my family. not just time in the day when i am home, but actual time spent interacting with my family. i need to be a better, and more supportive, understanding friend to my own friends. i need to let the little things go and stop arguing over stupid stuff. i need to appreciate my nephews and the princess more. because life is fragile. if there is one thing i take away, it is that knowledge.

in one morning, masey went from a bundle of bouncing boy with limitless potential, to a dying child--something you saw on st. jude commercials, not a reality. it was a hard reality to swallow. we had a matter of hours from diagnosis till surgery. a few precious hours to enjoy our masey boy. we knew the odds of him coming out alive. we knew the odds of him coming out with his full brain function. we knew the odds, but were praying and pleading that he could beat them.

and beat them he did! i know this journey cannot always be without speed bumps, and i know that he is definitely one of the lucky ones. i know that his brain still has to heal and he could easily get an infection. i know that he will likely need chemo or another brain surgery. i know that this will not be easy for us, and it will be extremely hard for masey.  but somehow, watching over him tonight, i feel confident about all of those trials. masey is a trooper. he is a figher. and he will win. he's my hero. and he is a miracle baby.

the before shot

the after shot

my masey

this post is about my darling nephew mason. sometimes i call him masey. some times i call him masey mase. some times i call him mason vili. sometimes i call him mae mae. sometimes i call him sione.

no matter what name i call him, he is still my masey. 

what is there to say when your world feels like it is crumbling down? today, my life changed forever. quite literally. i have always been dramatic, but there is no drama added to that last sentence. masey was the nephew i did not appreciate enough. you see, he lives with us, and being the brat i am, i took his presence for granted. this post is full of pictures of my masey. feel free to leave now if you do not want to see them or want to use them inappropriately (they are all the property of Penelope Lolohea Photography)

i love my masey. today finds him in the hospital, awaiting brain surgery in the morning. tonight, he was perfectly normal, telling us he is ready to go home and he is tired of the hostable. he was wondering where his nice nurse was, and why she wasn't bringing another root beer float. the only indications anything is wrong are the wires running all over his body and the fact he barely touched his macaroni and cheese. otherwise, he was quick to let us know he was ready to go home so he wouldn't be boring anymore. tomorrow will bring with a lot of challenges and trials for my masey. luckily for him (and me, i am not sure i can live without the kid, and i know i do not want to try) masey is a fighter through and through. for tonight though, i just want to talk about my masey because i love him. a lot.

it took a day like today to remember all of the tiny things i adore about this boy. i adore that he plays until he drops. he loooooves thomas the tank engine and anything thomas-related. i love that he knows every single engine, car, truck, or freight train who ever appeared on the show. not just their names, but what they look like, what type of train they are, what number they are. you name it, masey knows it. he is not afraid to correct you if you draw james or henry without tenders (yeah, at 24, i did not know what a tender was until my 3 year old masey told me)

i adore how awesome this kid knows he is. they named a  whole grocery store chain after him, and placed mcdonalds chicken nuggets in the world for his benefit. he gags at the thought of grilled cheese sandwiches, but loves spaghettios and macaroni and cheese. masey loves water, but not quite as much as he loves rootbeer. doughnuts and cookies are things he craves all the time. he knows that if he wants a yes answer, he just has to go to papa, who will give him a resounding yes answer. 

masey knows his manners and is always polite, even if he is growling the please at you through clenched teeth. he has yet to have a cavity and loves going to the dentist because they have a railroad track (even though the train is broken) masey loves the Lord and absolutely adores the book of mormon. he is fascinated by the stories, fascinated with the people and the decisions they make, and fascinated with the gospel. he loves church and primary and all his friends. 

mostly, though, masey loves his family. i think he adores us almost as much as we adore him. he constantly comes up to me and says um, auntie latu? i have to tell you something [dramatic pause after i answer him] i love you!  or he will come up to me after work and proclaim i missed you so much! masey is so good at loving and recognizing his emotions. tonight, as i pray that the world prays for my masey, i just want to add and add to this list. the things i love about masey are without number. i just adore this kid and am so blessed he is in my life. 

a truth of my own

well, i was invited to a halloween gno. one of the requirements for entry is a blog post about yourself, printed and brought. i'm not sure if i can make it to the gno, but i sure was interested in posting about myself. it's one of my favorite things to do!

my name is latutama. i was born in salt lake city, utah on a beautiful spring day in 1986. one day, i am sure i will not want to reveal my birth year, but for now, i am ok with it. 24's a great age to be!  i did all the normal things growing up- soccer as a child, baptism into the church of Jesus Christ of latter-day saints at 8, school from ages 5-18, some more school after that, work after that, etc. i guess the things that are not normal are the in-betweens. the story everyone really wants.

school has always been easy for me. i was blessed with a sharp mind, and the ability to express myself through writing. when i was in high school, i discovered that writing was an awesome stress reliever. back then, my writing was largely unseen by others. i would write a poem or paper (i called it prose, haha) and hide it away. the emotions and thoughts i wrote were far too personal to chance anyone else reading it. as i have grown older, i have learned to express myself without getting so personal i couldn't let others read it.

i adore talking about myself. that is almost the biggest reason i have a blog (see the paragraph above for the single biggest reason) being understood by the people i love is big for me. if people i don't like misunderstand me, i could care less. but i hate the thought that someone i love will do it. thus, i blog.

i was a headstrong, stubborn, bossy child. the only thing that has changed as i have grown older is that i have figured out how to take advantage of those traits. i can turn them on and off, depending on what the situation calls for. i am extremely good at reading people and manipulating them. sad to say, but i am. if i can get a foot in the door and get a job interview, i can get the job. i interview really well and people come out of interviews really liking me.

i like being right, and argue unrelentingly until i prove my point. it is annoying for the people around me, and annoying for me. arguing and having to be right is one of the few character flaws i don't have under control. i can physically stop myself from arguing if i want. but i cannot stop my brain from finding ways to prove my point. it drives me crazy that people might not know i am right at all times. but it really annoys me that i haven't figured out how to stop that thought process earlier.

i procrastinate. a lot. if something is stressing me out, or i am too busy to deal with it, i am great at filing it away in my mind and not thinking about it. that usually leads to procrastination. not always on purpose, but when i file something away, it's completely out of my mind. i have to be reminded to do it or deal with it or it never gets done.

all i have ever wanted was to get married and have tons of kids. i am not sure how it happened that i am the only girl in my family to make it past 19 without being married (and 21 without kids...) but i did it!! in a lot of ways, i am not ready to be married or have kids. i love being unattached, being able to do whatever i want without having to check with my husband or find people to watch my kids. in a lot of ways, though, the clock is ticking down. my single days are numbered. i know this, but i really want to just have fun while i can.

i adore my hair. it gets sun bleached in the summer, and darkens in the winter. it has redish/blondish highlights, which i love. the best part about my hair, though, is that i can shower, brush through it once, and not touch it again and it is perfectly straight. i adore it, unless i am trying to curl it. then it really sucks. for my sister's wedding, we had to pin it in ringlets, because no matter what we tried, it would not stick in curls.

i play womens rugby. i love rugby. rugby is the first time in my life that i have been able to be aggressive and strong and been able to tackle people. i love that i can play rugby and still walk off the field a girl, still be as girly as i want at home, but be really good at something so physical. rugby is the first sport i have ever loved. i played other sports, and enjoyed some of them, but i love rugby. rugby has taken over my life, but i have no regrets about it. i  ♥ rugby

i am ocd. another sad, but true paragraph. i obsess about things. a lot of the time, it is food i am obsessing about. i find a food i like, and have to have it all the time. usually, it turns out to be about 5-7 times before i am done obsessing about it. any time i am hungry, i want that particular food. after the 6th or 7th time eating it, i just stop craving it. i don't hate it, and would still eat it if i had the chance. i just don't need to track it down anymore. at one time, i was a counter. my number was 3. i loved things in multiples of three. one of my compulsions was counting things, especially car lengths and stride lengths. it made my world calm if i could neatly fit three car lengths in a certain space, or three strides in a space. i also had to tap things. if i was extremely stressed, i would need to tap every box of cereal in the store. less stress meant i could get away with just tapping one of each kind of cereal. i don't like getting dirty. unless i have already accepted that dirt is a part of my current environment. thus, while camping, i will sit anywhere, do anything and not worry about the dirt or bugs. when i am picnicing, though, i have to be careful. dirt is not a part of picnics!

wow, this post is long. but i told you i love talking about myself! one more thought before i stop, and an explanation of the picture. i have a camera smile, the one i like in pictures of myself. it is very different from my unplanned, real smile. my sister likes my real smile, and it seems like it is her mission in life to catch it. the following picture is an in-between smile. i had my picture smile on, and my sister made me laugh, so this is the mixture of real and fake. it's not very pretty, i know. but, i felt it was worth documenting. especially cause it's already tagged of me on facebook. :)

super powers

i was talking to my sister yesterday about her son who is in kindergarten and his first experience staying home sick from school. long story short, he regretted wanting to stay home about 10 minutes after making the choice (when he found out it would not be a fun-filled, play with friends kind of day!)

it made me think of when i was younger and would convince my mom i was too sick to go to school. when i was too sick to go to school, my mom would put me through a cleaning test. she told me she could tell by how i cleaned if i was really sick or just pretending. believing my mom to have super powers (because she only put me through this test when i was faking it) i would diligently clean all three or four rooms assigned, all the while, making sure to milk the illness. i would pretend to struggle pushing the vacuum (i was so weak from being sick!) and have to take a breather after every few times bending over. sometimes, i would crawl across the room to pick things up. folding blankets took an eternity and dusting made me cough frantically. i thought i was putting on quite the act.

it seemed to work every time!  my mom was buying this crap!  its only now that i look back that i realize my mom just wanted a clean house. she didn't as much care if i was really sick, i was making myself useful at home.

for that creativity and so many more reasons (i'm remembering pick up contests with my siblings-- whoever picked up the most rubbish or toys off the floor won; quiet wars and quiet time) i love my mom. hopefully one day, i can convince my own kids of super powers like hers!

magnet

my grandma was one of those people. the kind everyone wanted to be around. no matter where she went, she would draw a crowd. she was like a magnet. people would drift toward her. if grandma was going to be somewhere, or at some event, it was enough reason to go also.

one week ago today, i experienced that same feeling, only it was not with grandma-she's long gone. this time, grandpa was the one creating the magnetic field, gathering our loved ones around us. it happened at my brother's football game. before it clicked, i watched as wave upon wave of family came walking up to our spot on the bleachers. sitting there, surrounded by family, i listened as they each chatted and caught up with each other. i loved it, it felt so much like home. while watching the kids play on the hill, i realized why i loved that feeling so much. it has been years since my grandma's been around. last thursday, i felt the same feeling i used to feel when she was here.

i'm so glad that my grandpa came down to watch the game, and so glad i got to see all my family!

grandpa with all of the kids (that's sweet elise behind the sippy cup, lol)

once upon some times

well, his post is gonna be a lot of once upon a times. :)

once upon a time, i forced myself to throw up so i could leave work early and go watch my baby brother's football game. that was at 3pm. i spent the rest of the evening on the verge of really throwing up. karma is a b*tch and i probably should have stayed at work.

once upon a time, i spent a few months sneaking out at night. my friend and i would push my brother's car down the driveway and down the street, before jumping in and starting it. we got more and more nervy with our sneaking out as time went on. eventually, i stopped jumping out my window and just left through the back door. one night in particular, we pushed the car right past an rv that was parked in front of the house and came within inches of hitting it.  we laughed it off and continued on. the night that halted our escapades was when i spent about 4 minutes stalling the car all the way across an intersection and into an arby's parking lot. that same night, when we came back in the wee morning hours, my baby sister was waiting for me in my room. she claimed that someone had tried to open my unlocked window and come to rape her. for some reason, in her story, this person merely opened the window and stuck their head in, then closed it. no matter how unplausible her story, i decided i would not sneak out again. i could not afford to let my sister get kidnapped, just so i could sneak out. i thought we were so devious and sneaky. now, looking back, i realize we were just dumb. (and my sister was just caught up in all the elizabeth smart drama)

once upon a time, my favorite past time was stealing caution cones and cross walk flags. i would use them to mob people's cars. cake mix, saran wrap, and oil make the best materials.  so much more fun than toilet papering a house. almost as much fun as power boxing a house/apartment complex.

once upon a time, i had a conversation with a friend about having never seen a ghost or had anything creepy happen to me. less than a week later, i saw a ghost at an abandoned house in american fork.

once upon a time, we looked up the sex offender registry in a civics class. building up to this (required) search, we made lots of hurtful and unnecessary comments. i guess what high school kids wouldn't?  anywho, as it turns out, the father of a girl in our class is on the registry. she pretended to be shocked, and  left immediately after that and dropped the class. i can't even explain how awkward it was, or how badly i feel about it still.

once upon a time (ok,so this past saturday) i cracked my sternum. you can clearly trace the outline of one of my ribs as it attempts to connect to my sternum. it is swollen and hot to the touch, but ibuprofen helps a little. it hurts to exhale, it hurts to twist, it hurts to bend down, it hurts to stand up straight, and it hurts to touch it. basically, it just hurts. hahaha.

once upon a time, my daddy was working on a hotel construction in maui. because of hawaiian laws about construction in the area of burial grounds, construction would have to shut down if they unearthed any kind of remains. so, my daddy would bring bones to work (chicken, steak. you name it) and hide them, only to "find" them whenever he wanted an early weekend.

my masey

this is my mase:

his mom is gonna cringe when she sees this picture. she is my sister and does professional photography, and this pic is nothing more than me pointing and shooting with a $100 camera. but i love it.

he loves thomas. i am not sure you can read that on his shirt, but this kid is obsessed. we rode the thomas train this summer. it was 15 minutes long. the train inched about 300 yards from the station and then back. this kid was in heaven, though.

there is a store around these parts called maseys. it is a grocery store. and he thinks it was named after him. he loooves going to "my store" and getting ice cream cones bigger than his head. i wish i were still so innocent to firmly believe that someone decided to open a chain of grocery stores and name them after me because i'm just that cool.

we bash heads a lot, this kid and i. i tend to think i know everything, and he knows he knows everything. we are both stubborn and grouchy. i have a neice who is my mini me, and hes the male version of that. secretly, though, it makes me love him even more. i get him.

masey's best trait, though is his caring. last night, at about 1:20 am, i got a phone call from this sweet boy. he had a dream that my car was on a boat that was sinking, and i was dying. he was so worried that i was dead, he made his mom come with him to find me, and when they couldn't do that, he made her call me.

this morning, when i came home and he woke up, he was beaming. he was so glad "my latu" was not dead. for that, and so many more reasons, i adore this kid!  (oh, and sorry pene that i didn't use one of your pretty pics....)

you make me want to float away

this old man turned 57 today.

we can't talk about today as his birthday, though. when he was born, his mom waited too long to register his birth. to avoid paying a fine for beingso late, she told the government his birthday was two months later than it really is. so, for most of the world, he is still 56. but you and i know the truth.

i have so many things to say, its hard to even put into words. i love this picture so much. almost as much as i love this old man.

i am so grateful that he let me take this picture of him. usually, he brushes us off or will make goofy faces, but this day was different. i have always thought that i am a white version of him, and i think this picture shows that pretty well (ok, ok, i am prettier and younger!)

one day, i want to have smile lines permanently surrounding my eyes like his. if the smile lines on my cheeks never leave, i'll be a happy girl. i want to wear the signs of a happy life on my face, for the world to see. smile lines are by far the most beautiful part about growing old.

on this day, when i remember how old my daddy is, i also remember how fragile life is. i am so grateful he is around still. 5 years ago if you would have told me he'd still be around and kicking, i would have kicked you cause that's not funny.  but here he is, 57 years old (or 56, depending on who is asking!) and still going. i am eternally grateful for his presence in my life, and i pray he sticks around another 5 (or 50) years!

i feel it all over my body

have you ever loved someone so much it hurt?  i'm feeling that love right now, but the people i feel it for are people i've never even met.

i have been contemplating life a lot lately. the other night, i laid out under the stars for hours and just thought. i couldn't sleep, my mind was racing. it was a good time, i really needed the thinking. i thought a lot about the children i will one day have, the direction my life is going vs where i want it to go. if it weren't for those sweet, innocent spirits, there is no doubt in my mind that i would spend the rest of my life partying and playing. but i know that's not what i really want.

everyone has to grow up sometime, right?  the only problem is that i feel like i have grown up. this phase is just a passing one. just a place holder, the bridge into the rest of my life.

no matter what my life brings, i am determined to be the best mother my children could wish for. it's the least i can do, right?

along those same lines, i am going to france, baby!!!! i have like 4 or 5ish weeks left, and you are probably wondering how this applies to the rest of the post...hahaha

really, though. one day, i want to settle down and live the dream (house, kids, husband) but for now, i am single and i plan on living it up. how often do you really get the chance to visit france?  i can tell you for myself, not often.

i send you my love

so, i have a secret blog. one that i post on when i don't want the world to know my life. i actually don't post on it a lot because i am fine with the world knowing most of my thoughts. but some times, a post here just can't do justice to what is going on in my mind. sometimes, a situation is just too personal for sharing with the group. thus, i post on my secret blog. it feels the same as posting here, but i know that i can be 100x more honest and make 100x less sense on my secret blog. it's like a journal, only i can type into it at my convenience. i am a huge fan of keeping accurate records for my future posterity, and a secret blog really helps me do that. 

that was a lot of explanation.  haha, probably too much, but there you have it. you, the unidentified internet masses, are not privy to all of my innermost thoughts. just most of them.

the water's always changing, always flowing

well, a few weeks ago, at the NTAS tournament, i sprained my ankle. seriously just a few days ago, it stopped swelling and i began to be able to run on it. it was perfect timing, as we had another tournament this past weekend (which we won :) my bruises from this tournament are much smaller and nicer, but i have a bruise right over/to the side of my left eye. i don't know which i would rather: huge bruises that hurt a ton, but people cant see; or a little bruise that is super visible but doesn't hurt....

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pocahontas has always been my unofficial disney princess. when i was younger, i was convinced i was an indian princess. it didn't matter to me that my mom was 1/16th. that made me 1/32nd, which was a lot of indian as far as i was concerned. i loved the songs from the disney movie, especially just around the river bend. it was fascinating thinking about rivers from that perspective. the water always changes. every time you step into a river, it's a completely different river than the last time. i love that concept.

i also love rivers. or water in general. my new job is right across the road from the provo river (or the rapist river, for those of us who are super specific) during lunch, i love to walk across and just sit by the river. it's so calming and nice.  just me and the river. any time work has been annoying, i go to the river and can literally feel the tension drain off. its like pulling the plug in a drain.

the reason is that white noise is calming.

i first learned that once upon a time when i worked as a tracker in a junior high. it had been a super stressful day, and i was soooo tense (and dramatic, too, haha!)

i ducked into the auditorium. just to be alone for a bit (another thing i love) i turned on the house lights, and plopped down in one of the chairs. i was completely alone in that huge room, with only the sound of the a/c to keep me company. i just sat, listening to the white noise and realized my breathing was slowing, my jaw was loosening, and i was not tense anymore. not.at.all.

the white noise cancelled out all of the other noises, and provided a baseline for my breathing and heart rate. since that day, i have loved it, and sought it out any time i needed to calm down. it's a little different than pocahontas, but that's what i like most about rivers.

time

well, today is the three-year mark. it's the day that marks three years since my grandma's passing.

today, of all days, i miss her a lot. yesterday, my rugby team won the national tongan american society's womens tournament. it feels like we won the world, but i am sure the world doesn't even know the difference. it was a fun weekend, but i was not able to completely erase the memory from my mind. my grandma would absolutely adore that i play rugby. it would be in the newsletter constantly.

my grandma wrote a newsletter weekly. it was called meanwhile, back at the ranch. she began writing it for her kids and their families, but it soon spread because so many people enjoyed reading it. by the time she passed, grandma was writing to all sorts of people, family and friends. she would report on her family, if there was anything noteworthy (or even worth mentioning) going on, she would put in in there. she always had fun titles for sections and pretty pictures.

i lived for that newsletter. i think that is one thing that i miss the most. that newsletter, or the lady behind it, was a huge part of the glue that bonded us as a family. we were always kept abreast of the family's business. we knew when a baby blessing or baby were coming up, what activities had been going on, who stopped by to see grandma, and what her moods were like. toward the end, we became experts on the chemotherapy treatments she was undergoing. we all joined her in a diet that was destined to save her from imminent death from leukemia.

that newsletter kept us all together. it kept the family functions often and close together. that newsletter came to represent all that grandma was. it was a source of information, a resource, and most importantly, a bond. when she passed away, so did the newsletter. sometimes, i still catch myself thinking "i should tell grandma so she can put this in the newsletter" or more often, "i don't want this making it into the newsletter" it's a nice game to play, imagining what information grandma would include in a newsletter written today. would she tell us about my small brother playing the uke? my little cousin going camping? my rugby? for sure, she'd write about the family that gathered in idaho this weekend. she'd have so much to say.

the truth of the matter is that i think i am trying to re-create that newsletter--on a smaller scale--with this blog. i have so many thoughts and feelings, i want to share them with people, but more than that, i want them to be out there. i want them said.