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.