Sunday, October 31, 2010

no. 31: edumacation

dear little leah, 

what a month! i'm glad i was able to record some of my thoughts about our day-to-day with rett syndrome. it's been therapuetic for me and i hope it's been educational for others. because you've sure given me an education. 

i've learned so much about how to treat and not treat other human beings. i hope others know they can talk to you, not just about you, to me. i hope others know how bright and able you are, rather than just seeing you for your disabilities. i hope others will learn, just as i'm trying to learn, that simply because someone is different, doesn't mean they're less. 

i hope, by my own example, i can help others to learn to be a bit more compassionate, a bit more accepting  and a bit more understanding of others who have needs and abilities that differ from their own. to not stare or gawk or try to get away. i'm more than happy to share you with the world little leah. {most days} i love to talk about you and show others what an amazing little girl you are.

i hope people know that, no matter what, i would never ever ever choose to not have you in my life. struggles and all, you are a daughter of god and you deserve to be loved and to have opportunities to love.

i've learned to let others be the source on whatever they're dealing with - to hold my tongue, suppress my advice and let them be. to not judge based on what i see, because i really don't know. i've learned that no matter if people appear to be "normal" or not, we're all struggling with something. i've learned to better shrug off the comments about how perfect i am to be dealing with this "trial" in my life. trial or not, nobody's perfect. lots of people fail. lots of days i fail. but i'm trying my best - just as anyone else placed in this situation would do.

i've learned to be more open with my emotions. this has the potential to get me in trouble as sometimes my emotions include negative thoughts and things i wish people knew or didn't do. but i've learned that most people don't mean harm. most people are just trying to help and most likely just don't know how to - just like me one year ago. 

you've taught me a lot, little leah. hopefully i've taught you some things too. and i know we both have more to learn. thanks for the education. 

love you. 

Saturday, October 30, 2010

no. 30: d day

dear little leah, 

one year ago today, i answered the phone. and that phone call forever changed the course of my life. it had been a good day and i was in the kitchen cleaning up after lunch as you were taking your afternoon nap. it was your neurologist. the conversation went something like this:

“maren, i need  you to sit down,” she said.
“okay,” i replied, and lied, as i continued to clean with the phone to my ear.
“i got the blood test results back today,” she said. “leah has rett syndrome.” 

and then i stopped. i didn’t sit down, i fell down to my knees on my hard linoleum floor. somehow i held it together for the remainder of our brief phone conversation. 

“remember,” she said, “a diagnosis doesn’t change your little girl. she’s still the same. and she still needs you today just as much as she did yesterday.”

as i hung up the phone, i fell apart. i cried for what seemed like forever. i felt so alone. i needed to tell someone. i called your daddy – he didn’t answer. i called grandma – she answered, but i didn’t have the words to tell her, so i just cried. sShe knew. she cried too. 

it’s been months since that fateful october day. i’ve done a lot of thinking, a lot of crying, a lot of researching, a lot of learning and a lot of loving. i’ve met many mothers who have been where i am and have offered much needed advice. i’ve been uplifted by friends and family who have selflessly listened to my fears, fasted and prayed for our family, and helped in ways they probably don’t even realize. 

some days i still wake up hoping it’s all a nightmare. i still dream that you will run into my room, wearing a silly outfit you picked out yourself and tell me the craziest story or ask the funniest question i’ve ever heard. isn’t that what three year olds do? i still dream that you will learn to sing the songs every child should be able to sing, or go potty like a ‘big girl’ or color a picture with your favorite colored crayon or simply say i love you. but for now, none of that will happen. 

and it’s okay. 

elder holland, a latter-day apostle, said: “…it is not without a recognition of life’s tempests but fully and directly because of them that I testify of God’s love and the Savior’s power to calm the storm.  Always remember in that biblical story that He was out there on the water also, that He faced the worst of it right along with the newest and youngest and most fearful.  Only One who has fought against those ominous waves is justified in telling us—as well as the sea—to “be still” (Mark 4:39; D&C 101:16). Only One who has taken the full brunt of such adversity could ever be justified in telling us in such times to “be of good cheer” (John 16:33; D&C 68:6). …Christ knows better than all others that the trials of life can be very deep, and we are not shallow people if we struggle with them.  But…the Lord expects us to believe!” (“An High Priest of Good Things To Come,” Jeffrey R. Holland, Trusting Jesus, pp.93-94).  

i have good days and i have bad days. you have good days and you have bad days. we definitely haven't weathered the entire storm, but we're going it together. and we've come a long way. one year has made a world of difference. i can't wait to see the progress that is made in years to come. progress with you and your abilities. progress with research, treatments and possibly a cure. progress with my emotional and physical ability to be the best mother i can be. 

daddy and i always said that whatever it was that was plaguing you, we definitely wanted to know. a year ago today, we found our answer. on one hand, it was the exact news we didn't want to hear - that it wasn't just a phase. you wouldn't just grow out of it. on the other hand, it was exactly what we needed - a place to start. it was the night of our church trunk or treat. you were the cutest little witch, and it should have been a happy event. i walked around with a smile on my face and a hole in my heart.

our life ended and began on october 30, 2009, little leah. diagnosis day. but i will be forever grateful that i have you and your daddy, wonderful friends and family and a loving savior to help us along the path. we can do this. 

i love you, little leah. 


Friday, October 29, 2010

no. 29: lean on me

dear little leah, 

i know i wrote to you a little bit a few days ago about our rett family and how much their friendship means to me. but i couldn't let the month go by without expressing my gratitude to friends and family that have nothing to do with rett at all. 

no one chooses their families - they're just kind of sent to us and we learn to love. but we're lucky enough to have family that is pretty easy to love. grandmas, grandpa, aunts, uncles and cousins who love you to pieces and would do anything in the world for you. i'm pretty sure both grandmas want me to stick you in a box with some bubble wrap and ship you to an 84xxx zip code. your uncle ed chose to donate the federal portion of his paycheck to rett syndrome research {and rallied some other bp agents to do the same}. uncle dan downloaded some yardigans episodes onto his iPad and can't wait to see what you do with it next weekend. the list could go on and on. 

i've always been lucky with friends. or more likely blessed. and the friends i have now are no exception. they have lifted, strengthened, served and blessed our family in ways i could never count or explain. these friends have listened to me whine and complain about their own kids while completely understanding i'm only doing it to mourn the loss of your abilities. our friends here have become our family. we celebrate holidays with them. we have birthdays with them. we basically do everything with them and we are so blessed to know them. they just kind of fell into our laps and i kind of want to put them in my pocket and carry them wherever life takes us. 

it's our everyday friends and family that see the good and bad and accept us anyway. they love us all for who we are - strengths and weaknesses - and don't try to change us. they seem to almost sense what we need and jump at any opportunity to serve us. case in point: we asked ty to help you smile for the camera today and without even flinching, he took us literally. you didn't mind.
i sometimes get overwhelmed with emotion when i think of how blessed our family is with friends and family members. they're the reason we're alive and well today. they pick up where i leave off and tie off all my loose ends. they reach out their hand when i'm falling and offer a shoulder to lean and cry on. they laugh with us and cry with us. they learn with us and help educate others. 

we truly are associated with the best, little leah. i know that. you know that. daddy knows that. now let's do our best to make sure they know it.

i love you, little leah.

Thursday, October 28, 2010

no. 28: dear dad

dear little leah, 

just want to let you know how grateful i am for your dad. he sure loves us. he works so hard all day {and sometimes into the night} for us, then comes home and works for us all over again. 

he's been buuuuuuuuuuuuuuuuuuusy for the past few months with lots and lots of things, but he always makes time for you {and me, but this letter is about you}. time to cuddle, time to dance, time to read, time to sing. time to feed and change and dress and bathe. time to give me a break and let me get away. he checks on you every night after you go to sleep. sometimes multiple times. in the middle of a random conversation he'll smile and say something like, "i sure love that little girl." and he really, really does, little leah.

you've kind of got him wrapped around each one of your little fingers. a few times. let's make sure he knows we love him too. 


Wednesday, October 27, 2010

no. 27: IEP

dear little leah, 

I.E.P. just three simple letters and yet, when put together, they've become three of my most-dreaded letters of the entire twenty six. they stand for individualized education program and every child in california that has any kind of special, specific or additional need has to have one. 

a team usually gets together to create a child's IEP. teachers, employees from the school district, therapists, parents, and more. and they all have to agree as to what services each specific child will or will not be able to participate in and who will pay for said services. goals are set to reach certain milestones. the goals have to be very specific and measurable, which is a lot more difficult than it sounds. it's lots of preparation on my part and lots of paperwork for everyone.


and if it's not in your IEP, tough luck. you don't get it. so, if i forget to ask for something or don't know something is available, it's most likely not going to be brought up and you will not be blessed with those services for the entire year. 

oh yah. and IEP lasts for a year and has to be re-created annually.

we truly lucked out with a great team of individuals who all seem to have your best interest in mind. but, last february, i wasn't incredibly educated about the whole system and am already realizing how i could have done things much better and am seeing services that you could really be using right now. 

i had the opportunity to sit in on an IEP for one of your rett friends. her mom is really on the ball and just kind of gets the whole advocating thing. i'm seriously thinking of hiring her for your next IEP. this little girl is five, so she's a little more advanced with technology and the like, but i got so many ideas for your year four IEP as well as how it's all organized and run. 

and i feel much more prepared. 

hopefully this year we'll get a little more of what you need. i'm learning, slowly, how to be your mom, in hopes the letters i, e and p won't send me into heavy sweats for the next 15 years. thanks for being patient. 

i love you.

Tuesday, October 26, 2010

no. 26: i wish i never HAD to meet them

dear little leah, 

today my thoughts take me to some wonderful people. wonderful people that i wish we never met...or i wish we never had to meet. but i'm ever-so-grateful we did. these wonderful people are our rett family.

if there's one good thing that has come out of this whole rett mess, it's most definitely the people. we've known these families for six months, at most. many, much less than that. some we've never physically met, we've just gotten to know them online through blogs and other media. and yet we feel so connected. like we've known each other for years. and we've known each other well. 

some live rather close to us. some are very far away.

some are old. some are young.

some of them have girls who seem a lot like you. others, not so much. some girls can walk. other's can't. some girls have feeding tubes. others eat food just as you do. some have seizures. some have heart problems. some hyperventilate and hold their breath...and then some turn blue and pass out. some have balance issues. some are constantly wringing their hands and mouthing. some need braces on their arms. some need braces on their legs. some need wheelchairs.

but all of these families have one thing in common and that is that they are living with rett syndrome every single day, just like you. just like us.

each of these families has a love so deep for these sweet girls that nothing will stop them from giving their girls the best.

these families have provided emotional support for me. one mom who lives locally told me just a few weeks ago that dr. mary, the dr. at the clinic we go to, told this other mom about us last december. she warned the mom that this new mom {me} might not be ready to talk just yet. and she was so right. i needed some time to just be. to let the news settle. to mourn. to let some dreams die. and then i was ready to jump right in. and when i jumped, this mom was there to greet me.

some families have provided great friendships. just knowing other families know what goes on from day to day - and can see your behavior and not think it's anything unusual - is a wonderful feeling. i never have to explain myself. i never have to answer questions. i can just be.

some families have provided encouragement and the umph i needed to really get involved. these families dedicate their lives to the rett syndrome cause and it's really admiring. they work for rett syndrome organizations. they are up to date on the latest and greatest research and medical advances. they organize strollathons and fundraisers and other events to raise funds and awareness.

some families have provided a relief for the future. seeing these families function - and function well with multiple children {older, younger, boys, girls, small gaps, large gaps, doesn't matter} has been comforting and encouraging.

some families have provided practical, useful information. things to help you out with your communication, supports for school, ideas for therapies, help with questions about eating, sleeping, breathing, walking, falling, anything-else-you-can-think-of - these guys have the answer.

some families have provided the knowledge i need to jump through the medical and insurance hoops. they know how the regional centers work. they know the questions to ask. they know what's available and how we should go about getting the help that we need, specific to your development and abilities.

some families have provided the ability to let my emotions flow. hearing these {mostly} moms talk about their day-to-day lives with their girls sometimes makes me cry. sometimes makes me think. sometimes makes me dream. wonder. wish. laugh. hope. work. the list could go on and on and on. these families have helped me to feel and understand those feelings better than i ever could have on my own.

i hope our friendships and connections continue to grow and develop as quickly and deeply as they already have and that we can continue those relationships when all you sweet little girls are cured. i imagine a day when all of YOU get together and can laugh and chat and cry about your former rett lives - and how you've all become better and stronger individuals for those struggles you overcame.

my life has been blessed and more full because of these families we've been able to meet in the last few months. and, although i really, honestly, truly wish i never HAD to meet them, i will forever be grateful that i did.

i love you little leah. and i love our rett family.

Monday, October 25, 2010

no. 25: we are family...

dear little leah,

at the beginning of the month, when i first decided to write one letter to you each day in october, i started a list of possible ideas. i knew that some days i'd want to write about whatever happened that day or something i hadn't thought of until later in the month, so i left a few days blank. some of the ideas i originally wrote down i really want to write about, but i just haven't been able to find the words. so those got pushed to the side.

but there's one that just keeps nagging. i kept skirting around it and it kept showing up again. the word on the list was siblings.

i have three siblings - two older brothers and one little sister. you know that! we are all very different. so different, in fact, that sometimes i'm still surprised that we're actually all friends. but we are. i get to see two of them in two weeks and i'm antsy with anticpation.
but i don't mean my siblings, leah. i mean siblings for you.

oh, little leah. sometimes i just don't know what to think. i really, truly want you to have siblings. plural. more than one. my original plan was to have another baby in between your second and third birthdays. as your walking was delayed, it was an enormous stress on me and daddy and we pushed it back a little. by the time you were two and a half, we decided we were ready. and, for the last 16 months we have been "ready", but it just hasn't happened.

i'm not sure why. we had no problems getting you here. as in you-took-a-month no problems. there have been days...and months {in particular last fall}...where i've been super glad another sibling was NOT on his or her way. and there have been days where i have ached to be holding your brother or sister in my arms.

i've watched friends and family members get pregnant with their first, second, third and fourth children after we decided we were ready...and then deliver those children already. i've watched friends struggle with infertility and miraculously become pregnant. i've watched friends adopt. i've watched friends be upset that they are having a child. i've watched friends be surprised. i've watched friends plan it perfectly and have it go according to plan. and all the while i wait.

to top it off, you absolutely love babies. if we go anywhere a baby is, you stop and stare. you smile. you giggle. you pat ever so gently. you are so interested and so in love with these new and perfect beings.

i definitely have my fears about siblings for you. i worry about how i'll feed them...and you. dress them...and you. change them...and you. carry them...and you. but i know it will work out.

i worry about the age difference being too much. but i know it will work out.

i worry about disciplining them and holding them to one standard when i don't and can't hold you to that same standard because your abilities will be different. but i know it will work out.

i wonder if they'll understand you. if they'll advocate for you and stick up for you. i wonder if they'll see you as different or if they'll just accept you for who you are. i worry that they might think it's not "cool" to be around you. i wonder if they'll ever just be silly with you. but i know it will all work out. 

i've had my moments of anger in the past 16 months, but mostly i feel at peace. i really do think you'll get siblings one day. i have no idea when and i really don't know how they'll join our family. but i just feel like they'll get here, somehow, when the timing is right...because our family is definitely not complete. 

i also have the most wonderful feeling that they will be prepared to be in our family. they will understand the challenges that will come, but they will be up to the challenge. they will also see the countless rewards and blessings and will feel rewarded and blessed themselves to have leah as their big sister. those are some lucky kiddos if you ask me.

leah, you are going to be the best big sister this world has ever known. and i'm so excited for that day - whenever it is. you've already blessed my life so much and teach me countless lessons each day. i can only imagine what your future siblings will teach me and what you will all teach each other.

i love you, little leah. to the moon and back. and i can't wait to love your siblings too. whenever they're ready.



Sunday, October 24, 2010

no. 24: hey, i'm a receiver

dear little leah, 

i'm kind of an independent gal. i like to be alone and do things on my own. i like feeling able in all aspects of my life. i've never considered myself a needy person. and, until recently, was most definitely on the giving end of the scale of life. 

enter: you. 

it's been an interesting and hard and humbling lesson for me to learn, and i'm not all the way there yet. on the one hand, i don't like asking others for help and i don't like to feel like a charity case. i don't like feeling incapable of accomplishing anything in my life. on the other hand, i'm ever-so-grateful for the help that has been offered on our family's behalf. 

dinners. babysitting. prayers. monetary donations. well wishes. shoulders to lean and to cry on. listening ears.  thoughtful and encouraging notes. the list could go on and on. and, sadly, i'm sure i'm not even aware of all the kind acts performed on my behalf. and the whole transition has been altogether uncomfortable for me. feelings of inadequacy and neediness {oh, the shame!}. putting on a brave face when all i want to do is crumble into a puddle of tears. wondering when, exactly, i might see a spec of light at the end of the rett tunnel. 

and yet, i have no problem giving this kind of service to others. i'm not the most thoughtful person on the planet, but i try to see the needs of others and help them out if i'm able. i don't mind bringing a warm dinner to someone in need, or cleaning their bathroom, or donating a few dollars, or watching their children, or offering prayers on their behalf or just listening when they need to talk. and i don't ever think of these individuals and families as charity cases or needy.

so why, then, do i feel so awkward and less-than-able and full of shame when i'm on the receiving end? i really don't have an answer. i'm not sure why we feel so inadequate when we need help from others. isn't that what this life is all about? to serve and be served and to help each other come unto Christ? that's what i've been taught. and i do believe it. yet it's still such a hard lesson to put into practice. 

but i'm working on it. and i wanted to send a little thank you your way for helping me to learn this lesson. for allowing me to begin to know how good it feels to be served and loved and thought of when i feel so alone. for helping me to understand the importance of letting others serve even if it means feeling a little inadequate and not so independent every once in awhile. thanks for humbling me and sending me to my knees on my darkest and dreariest days only to watch answers to my prayers unfold right before my eyes in the form of a family member or friend. you're a tricky girl, teaching your mom all these big, fancy lessons. and i love you all the more for it. to the moon and back.

Saturday, October 23, 2010

no. 23: your eyes, your eyes

dear little leah, 

when i caught my first glimpse of you that rainy february evening in 2007 {let's remember i was drugged, okay?}, my first thought was, "oh, she's perfect, but who is that baby?" with your fair skin and your light eyes and somewhat bald head, surely you couldn't be my daughter. i was olive toned and had a head full or dark hair ready for a ribbon on day one. and then i realized your dad had a part in your creation too - and you looked just like him. if it weren't for your nose, i might not have believed you'd just been not-so-gently ripped from my abdomen. 

i wasn't able to see you for about a day as they whisked you off to the NICU to monitor a potential heart issue, and i stayed a floor below, unable to walk. when i did finally go up to hold and kiss and cuddle you, one of the first things i noticed was your eye. it looked as if your left pupil was longer than the other. of course, the first few weeks of your life, you didn't give us many chances to actually look at your eyes, but when you did, i noticed. i wasn't sure if this was a dangerous thing or not, so we had it checked when you were about one month old. 

turns out, you have a congenital birth defect called coloboma, a "hole" in, your case, the iris. It's caused when a gap called the choroid fissure fails to completely close up in development before birth. the doctor explained it as a zipper and the zipper on your iris never zipped up completely. luckily, yours is cosmetic. only the iris was affected, not any of the muscles or other structures in your eye. you can see just fine and get a cool cat eye to boot.

your coloboma is one of my favorite features about you. i really, truly think it is beautiful, and so uniquely you. it's quite noticeable set against your brilliantly blue eyes and you get comments on it all the time. most everyone who sees it thinks it is super cool. and it is, just like you. 
i recently learned that the word "coloboma" in Greek means "unfinished." i'm not sure why, but this really struck me. in a way, i think we all have coloboma in one form or another. we are here on earth to learn and to grow and to better ourselves - to "finish" ourselves and return to our heavenly father as better and more pure and perfect beings. more than anyone in this world, you have helped me on that path. oh, i know i'm far from being perfect, but you've helped me to see a lot of my inadequacies and rough edges. and hopefully, with your help, i can continue to sand them down and finish myself off - and become as perfect as you were the day you were born. 

i love you, little leah. 

Friday, October 22, 2010

no. 22: baby talk

dear little leah, 

i try to be a positive person - especially when it comes to the efforts of others. i really, truly try. but there is one thing that really gets to me and i have a hard time seeing the positive in it. often, when people talk to you, they do so in a voice like they are talking to a baby. you know, that really high-pitched, sqeaky tone with lots of oooohs and aaaahs.
i understand that adults often talk to children in a different way than they talk to adults. and they talk to babies in a different way than they talk to children or adults. but, i'm pretty sure last time i checked, you weren't a baby. you are a child. and you deserve to be spoken to just as any other child. i don't mind treating you like a child - maybe speaking with some excitement in your voice or with a less extravagant vocabulary. but i do not understand dumbing it down to the level of an infant.
i don't know what to do, leah. it really drives me up a wall. i know they probably don't know what to do and in all honesty, i guess i'm glad they're talking to you at all, not just ignoring and avoiding you like some. 

but, because you don't respond doesn't mean you don't hear or understand. 

does it bother you as much as it bothers me, leah? do you even care? do you want to turn around and talk to them like they're a baby or punch them in the face or kick them in the shins? i do. maybe they don't even know they're doing it. maybe they think because you can't do or say all the things a normal three and a half year old does and says, that you don't understand. maybe. 
maybe they think they're being more kind by responding to you in that way. maybe. 

maybe they honestly, truly just aren't even aware that they're even speaking to you differently than they speak to their own three year old two feet away. maybe. 

i don't know. 

and i wish it didn't bother me so, but it does. and my only solution right now is to suck it up and be an example. to speak to you how i would like them to speak to you. and to treat you with the respect and understanding a three year old deserves. and i'll refrain from the face punching and shin kicking - for now.

i love you, little leah. 

Thursday, October 21, 2010

no. 21: piano (wo)man

dear little leah, 

i have to be honest. one of the hardest things for me to accept about this whole rett syndrome business was the idea that you would never play the piano. piano was and is a huge part of my life. my teacher told me i was a natural and i could often fake my way through my lesson even if i didn't practice as much as she thought i did. i took lessons until i was 14 and then convinced my mom to let me quit. she did so, hesitantly, and now i really wish i would have continued. even though the formal lessons ended, i continued to play daily. classical, jazz, ragtime {my fav}, religious, contemporary, you name it. it was a release for me. a way for me to unwind or destress or rid myself of frustrations. 

i didn't have plans to force you into doing much during your first 18 years, but piano lessons and daily practice were definitely on the radar. 
lucky me because you loved the piano from day one! you were always so interested in playing it and whenever you got near, you'd whine until we lifted you up to chime out your concertos and plunk your minuets. you did solos as well as duets with daddy and me and you always had a spot at the very end of my piano recitals to provide the post-program entertainment. one time i forgot to put you on there and my students swiftly reminded me that it was your turn. 

sometimes i still get so sad when i see you walk by the piano with somewhat of a longing in your eyes. every once in awhile, you'll stand there long enough and concentrate hard enough to whip those hands up and give the keys a few good pounds. and it is music to my ears. i looooooooove when you play. 

to be honest, i don't know if you ever will learn to play the piano. i really, truly don't. i'd love to say that i know they'll find a cure and someday you'll get your chance to let those fingers fly.but for now, i'll cherish your few plunks and pounds as well as the smiles and arm licks you so freely offer as you hear me play. 


no. 20: back to school

dear little leah,
today i went to parent-teacher conference with your sweet teacher, miss jenn. i see her twice every weekday, but it was nice to sit down and chat about you for nearly an hour. i don't think it was supposed to last that long, but we had things to talk about and she was willing! so talk we did.

she's a new teacher at the school this year, and your fourth teacher in six months. that's a lot of change and you have done beautifully! miss jenn mentioned that when she first found out you'd be in her class, she didn't know what to expect. she'd heard of rett syndrome, but only briefly, and had no idea what to do with you! she said she read parts of the rett bible and and something really struck her. it said that you would get as much from her as she was willing to give. it was then that she became less afraid of rett syndrome and more committed to giving you her all.

and she's done a great job! she has tried her best to adapt everything they do in class for you. she works with eye gaze consistently and gives you opportunities to "speak" just as much as all the other kids. she is getting better every day at recognizing your communication techniques. she's on board with trying to time train you on the potty. she's interested in high-tech communication devices to really get you going. she gets such thrills when you succeed and doesn't give up if you don't.

it was a great meeting, miss leah. you would know, you were there - running around eating my apples and giving us both nice kisses. i'm very impressed with all your hard work this year. you love learning and being at school {which isn't much of a surprise considering your double dose of nerds for parents} - and i know they love having you there. and that makes it so much easier to let you go every morning.

i love you, little leah.

no. 19: hairography

dear little leah, 

i'm a glee fan. for the most part. i watch it every week and, nerdily, wish all the performing choirs i was in in high school had been as cool as the glee club at mckinley high school. they replayed an episode this week called hairography, in which the glee clubbers used their hair theatrically. 

i'm pretty sure you could teach a class on hairography.

i didn't always think so. when you were born, your hair looked like it might have belonged to an aging man. thin, balding and nothing really on top except for a few scragglers. as your first birthday approached, i was giddy with excitement as the sides finally fit into two of the tiniest pigtails you've ever seen. throughout the next year, your hair just grew and grew. first on the sides, then on top, then on the sides again and then on top. 

the possibilities were endless. pigtails, ponytails, french braids, nubbies. oh, the glory! 

and the curls! they just did. not. stop. not too tight, but just perfect. it looked like i spent hours curling your hair into ringlets when your hair was down and went the extra mile and turned under the ends of your pigtails when it was pulled up. nope, that just happened magically. 

and then the thickness. little girls just don't have hair like that, leah. yours is already thicker than the locks on the heads of most of my adult friends!

and the SHINE. oh, your hair just shimmers. and it's soft and flowing and bouncy and beautiful. 

can you tell i love your hair? i have thick hair, yes. and it's partially curly, yes. but that's part of the problem. my hair is only partially curly, so if i just get up and go i look like a zombie from michael jackson's thriller video. i have to either straighten it or curl it...or straighten it and then curl it. takes a lot of time, leah. but not your hair. most 'dos can be done in two minutes or less {pending your cooperation and lack of wiggles}. 

so that's my memory for today. your hair. it's been a fun thing for me throughout the past few years to try new things and be a little part in making it beautiful. and it's something that hasn't really changed. a lot of things were taken away from you in the past year, but your hair wasn't. it just grew and and grew and became even more beautiful by the day - just like you. 

i love you, little leah. 

Monday, October 18, 2010

no. 18: oh! she means fat!

dear little leah, 

when your aunt kelli was little, she was kind of a picky eater. and when i say kind of, i really mean she would only eat tacos, olives and pepperoni pizza {uh oh, sailor}. 

my mom {your grandma} handled the situation quite well, if you ask me. kelli was required to try everything my mom prepared {just like the rest of us}, but i don't remember her ever forcing her to eat anything after that. one night at dinner, we were having some sort of meat and kelli refused to eat it. surprise, surprise. my mom patiently asked her why she didn't want to eat it and, after much prodding, kelli replied, "i don't want to eat the thin!" none of us had any idea what she was talking about and so my mom continued to patiently wait...until someone finally figured out that kelli meant the fat! she didn't want to eat the fat. my mom quickly cut off the piece of fat kelli was referring to and, if i remember correctly, your aunt ate at least her one required bite of dinner that night. 

i'm trying to be equally as patient as my mom was. and, to give you a lot of credit, you are quite a good eater. you will try almost everything i give you - even if you do end up spitting it out. but my problem is, i think i have to feed you the thin.  i mean the fat.

i know you don't want it. and i really don't want your heart to stop from streaming saturated fat into your arteries. so i'm trying to find the healthy fats, but that's hard! right now your diet is the same as before, only topped with butter, cheese and avocados. i try to sneak in a few nuts here and there and we've switched your milk intake to creamy vitamin d {i never knew milk really could leave a mustache until this week - your old pal skim never does that!}.

it's a start. 

so i'm sorry if you don't like the thin, but i'm putting my foot down. six pounds in six months - just like when you were one. we can do this. 

i love you, little leah. 

p.s. aunt kelli's going to kill me for printing this story, so let's tell her it was your idea, ok?

Sunday, October 17, 2010

no. 17: then and now...

dear little leah,

a few weeks back, i saw this photo challenge to re-create, if you will, old pictures. just comparing the then with the now. i really like this idea and i've done it with my siblings on a few occasions. but i just ran across the cutest comparison of you.

pink dolly.

you love this thing. pink dolly can bring a smile to your face almost any day. you used to wiggle your finger into her looped tag and only then settle in for the night. you look at her longingly at night and you try you best to pick her up as often as you can. even though you can only hold on for a second or two, i can tell you are pleased. her rattle is still in tact and brings a smile to my face every time i hear it - because her sound is how i know your hands have succeeded.

her body is tattered and thin. her face is worn and ripped. her entire right hand is missing, despite my efforts to reattach it. her color has faded. her body is limp. and yet she is still so full of life. she's been with us through thick and thin. happy and sad. good and bad.

i love pink dolly then...and now.

and i love you, little leah. then...and now.


Saturday, October 16, 2010

no. 16: giggle monster

dear little leah, 

they say children laugh hundreds of times each day. adults? only 10-20 on average. i think that held true until you came into my life. yes, you do laugh hundreds of times each day. but every time i hear you laugh, it makes me laugh, so i KNOW i laugh more than 20 times a day. 

i absolutely, one hundred percent love your giggle. it is beautiful and perfect and incredibly contagious. you laugh at people {and mean no harm}. you laugh with people. you laugh at yourself. you laugh at nothing at all. you are constantly laughing. 

this weekend has been no exception. yesterday, you found our rental car uproariously funny. today, our family photo shoot was down right hilarious {thank goodness for that!}. apparently bedtime was pretty amusing too. those darn pajamas, i tell ya. 

here are some videos of you laughing in october 2007, october 2008 and october 2010. we've omitted october 2009 because there wasn't much laughing going on at our house that month. remember? 

oh, but i'm so glad the giggles are back. thanks for making me laugh too. 


Friday, October 15, 2010

no. 15: rett syndrome facts

dear little leah, 

just for the record, and since facts are a good educational tool, i figured i'd take a day and post some facts* about rett syndrome. here goes...
 rett syndrome is:
  • a neurological developmental disorder NOT a degenerative disorder seen almost always in girls, but can rarely be seen in boys. 
  • most often misdiagnosed as autism, cerebral palsy or some other non-specific developmental delay. 
  • caused by various mutations on the MECP2 gene located on the x chromosome {there are more than 200 mutations. you have two mutations and are one of two people in the world that we know of that has those particular mutations}.
  • affects 1 out of every 10,000 to 23,000 births, doesn't matter the racial or ethnic group. 
  • causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function {this includes learning, speech, sensory sensations, mood, movement, breathing, cardiac function, chewing, swallowing, digestion and more}.
  • genetic in 5% of the cases and random in the other 95%. 
 rett syndrome symptoms:
  • most commonly appear after normal development of up to 6-18 months of life. regression then follows when communication and purposeful use of hands is lost.  
  • include stereotyped hand movments, gait disturbances, slow head growth, seizures, irregular breathing patterns while awake, isolation or withdrawal at first, inconsolable crying, motor problems, teeth grinding and more. 
  • can range from mild to severe depending on the location, type and severity of the mutation and x-inactivation {from the x chromosome}.
  • come in four stages: early onset {6-18 months}, rapid destruction {1-4 years}, plateau {preschool to adulthood} and late motor deterioration {5-25+ years}.
rett syndrome history:
  • first noticed in 1954 by a pediatrician in vienna, austria named dr. andreas rett, as he observed two girls in his waiting room making similar repetitive hand washing motions. he found he had six other patients with similar histories and symptoms and began to travel throughout europe to find others. 
  • noticed in 1960 by a pediatrician in sweeden, dr. bengt hagberg.
  • in 1966, dr. rett published his findings in several german medical journals and in 1977 he published a description of rett syndrome in english. 
  • in 1983, dr. hagberg wrote an article about rett in a mainstream, english language medical journal; this was a breakthrough in communicating details to a wide audience. 
  • in 1999, researchers from baylor university in houston, tx {with some help from standford university in palo alto, ca} discovered the the MECP2 gene that, when mutated, causes rett syndrome. 
  • in 2007, the effects of rett syndrome were reversed in mice.
in the past decade, researchers have learned so much about rett syndrome and what it does and does not affect. we now know it's not degenerative, that you aren't mentally handicapped and you have a very high potential for learning. your brain just can't communicate very well with your body - things get blocked and all mixed up. 

life expectancy isn't certain, as most who have been identified are 18 or younger. statistics show life expectancy for girls with rett is less than the average person, but it is not nearly as low as was previously thought. many women are living in their 40s, 50s and beyond. about 5% of the cases reported to the international rett syndrome foundation have resulted in death. they are often sudden and unexplained and are usually attributed to "seizures, swallowing difficulties, lack of mobility, compromised lung function leading to pneumonia or malnutrition intestinal perforation as well as accidents and illnesses."

with so many ties to other illnesses such as parkinson's, md, austism, cerebral palsy and more, interest in rett syndome is increasing and awareness is rising. knowledge is power and the more knowledge we have, the more powerful we will be in helping you and thousands of other angels just like you. 

love you, little leah. 

*for more information, visit 

Thursday, October 14, 2010

no. 14: falling

dear little leah,

just a quick thought today about how much i hate it when you fall. you did it three times today. well, just once, because the other two times i caught you as your entire body went limp.

we were super nervous about these falls a little while ago. the first time i noticed, we were at the children's museum amidst hundreds of {what seemed to be} normal kids. you went into this little room with the lights dimmed and a light spinning around the center projecting images onto the wall. it was kind of strobe-light-ish. all of a sudden, i heard a thud and you were spread eagle on the floor. you were limp for a few minutes and then back to normal. completely normal. as it nothing at all had just happened.

at first we thought they might be drop seizures. now we think they aren't. thank goodness. it appears that you just lose the tone in your body and you fall. usually, someone is nearby and can catch you. you're getting really smart to hold onto someone or something when you feel it coming on. if you don't, i'm getting pretty good at spotting them in the early stages before you totally lose tone and fall.

but i still hate it. three times today, leah. three times you fell limp in my arms and went somewhere else for a few moments. then you came back. you always come back. i'm so grateful for that.

i love you bunches, little leah.

Wednesday, October 13, 2010

no. 13: two-faced

dear little leah, 

i feel two-faced. like i have two lives. two ways that i respond to who you are and what your future looks like. two ways to deal with your struggles. two ways to see YOU. 

i read two different posts today from two different mothers who also have girls with rett syndrome. they were both completely different in how they feel about this disease - and both resonated strongly inside me. 

the first one i read was kind of a downer. and believe you me, i've had those days and i've written about them. it's kind of therapeutic, actually, to get those bad days off my chest like that. this particular mother was just having a hard time realizing that this is what her life  - her daughter's life - would look like for the rest of their lives! the doctor's visits, the therapies, the feeding, the diapering, the seizures, the mouthing, the breathing {or lack thereof}, the sleeping {or lack thereof}, the falling, the unstable walking or not walking at all...and on and on and on. i have these same moments, leah. i wonder why it all has to happen this way. why you have to struggle so much and why i was picked to help you through it. i can think of more than a handful of people who would do a better job than me without even trying. 

and then i read another post. this mother's daughter is a little bit older than you - about 10 years older. and this mother was so uplifting. she has never wondered what her life could be like. she just lives her life. she loves her daughter and everything about her and never questions or asks why or wants things any differently than the way they are now. i have these moments, too, leah. i love you just the way you are. you've taught me so much by being you - things i know i never would have learned had you been just like every other three year old on the block. i've loved every {silent} moment and the fact that i kind of have to take time to do things with you because if i didn't, you wouldn't ever get to do them. i've enjoyed the small things - things i definitely wouldn't have thought to enjoy otherwise.

after reading both posts, i decided i'm just two-faced. i'm not one extreme or the other. i have "why me" days and i have "i-wouldn't-have-it-any-other-way" days. i have "i love you days" and i have "if-rett-syndrome-rears-its-ugly-head-one-more-time-today..." days. 

i do love you just the way you are. i can't say i wouldn't change it, though. i still dream for a brighter future for you - one in which you can express yourself and communicate as i know you wish you could. one in which you can be an active participant not just a stationary bystander. one in which you aren't restricted by what your body can or cannot do or what other people think you can or cannot do. 

but for now, i love you for who you are today. to the moon and back. 

Tuesday, October 12, 2010

no. 12: (insert name here) awareness month

dear little leah, 

this month is not only rett syndrome awareness month, it's also down syndrome awareness month, domestic violence awareness month, cyber security awareness month, dwarfism awareness month and...breast cancer awareness month! {and more, i'm sure!}

how cool that you and your grandma get to share a "month". grandma hauley was diagnosed with breast cancer just a few weeks after we told her you were baking in my belly. she went through radiation and chemotherapy just weeks before daddy and i moved two states away. she was nearing the end of her chemotherapy when you were born - and she and grandpa drove through the night in the middle of a snow storm to surprise me in my hospital room. 
because of this timeline, grandma feels a special connection to you. in a book about her thoughts about cancer, she wrote, "leah was born one week before my last chemotherapy infusion. maren and ryan had just recently moved to california and didn't know many people there. the birth was sooner than expected, a c-section, and leah was in the NICU. richard and i decided that we needed to be with them so we braved a mountain snowstorm and drove to san francisco. surprising maren was so great - i will never forget the look on her face when we walked into her hospital room. i have felt a responsibility to educate my daughters and granddaughters about the potential for cancer, and leah being born in the middle of my chemo treatments was an unbelievable experience. i felt very connected to her. it was a blessing to hold her."
over the course of your first few months, you and grandma had a hair growing contest. grandma beat you out of the gate, but now you're about even. you both have great hair. 

almost every year, we've made shirts for the salt lake city half marathon for grandma and her boob cancer. you've worn one each year. can't wait to see what the next ones will say.

grandma was diagnosed in october. YOU were diagnosed in october!

each october, grandma {and whoever can join her} walks in a race to cure breast cancer. 
each october YOU will walk in a strollathon to cure rett syndrome.

i can't wait until the day when both of these diseases are out of our lives. cured. gonzo. it'll happen. i know it will. for now, i'm just glad you have someone to share your special month with!

i love you, little leah.