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