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.
love,
mommy

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. 

love, 

mommy

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. 

love, 

mommy

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

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.

love,
mommy

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. 

ilyttmab. 

love, 

mommy

Make photo slide shows at www.OneTrueMedia.com

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. 

love, 

mommy

*for more information, visit www.rettsyndrome.org 

{...}

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.
love,
mommy

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. 

love, 

mommy

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. 

love, 

mommy

no. 11: sorry, you have a dummy for a mommy

dear little leah, 

let's just get this out in the open. i locked you in the car today. 

{...}

okay. now that that's over, let me explain. 

you and i were headed to our friend's house to eat dinner. daddy was at work and not answering his phone {we figured he was in a super-secret, very important meeting}. we needed to get gas and larry {our trusty civic} was filthy, so we were going to give him a bath after we fed him. 

as i put you in the car, i made sure that all the windows were rolled up tight, the doors were locked and they were shut tight. check. 

then we drove to the gas station. i got my credit card out of my purse and left everything else on the seat. i thought to myself, "maren, you should take the keys out of the ignition." but i didn't listen. i just left them there. the car was off, but the keys hung there {later, they would taunt me}. 

as i exited the car, i popped the gas cap open and then, by habit, lifted the driver's door handle and locked the car. i didn't even realize i did it. it was just habit. i didn't immediately shut the door. i left it open. then, before i started pumping, i decided to close it. {i remembered when i was a little girl, the smell of gas made me want to puke and i wanted my mom and dad to shut their door as SOON as physically possible so i wouldn't have to smell the stank for one second longer than necessary.} i was just being unselfish, really. 

yup, so i closed it. remember, that was after i had unknowingly, automatically locked it. i realized it mid-slam. and then i thought, "no, i didn't lock the door. it's still unlocked. right? right?"

nope. 


locked. 


so were the other three doors. and tightly, i might add. larry was filthy, after all. 


i held it together and walked to the convenience store at the gas station. a nice man there lent me his cell phone when he found i locked my keys...and my CHILD...in the car. 


daddy didn't answer. neither did our dinner date. and, since i've rid myself of that habit i had when i was 17 of memorizing everyone's phone numbers {and those are two of the only five i do know} because my cell phone does it for me, those were all safely locked in my car too. 

a few people told me to ask you to just lift the lock from your seat. ugh. {curse word} that rett syndrome. even though you probably wouldn't have been able to reach it since you were safely buckled in your seat. but still, {curse word} that rett syndrome.

i started to walk into the convenience store to call a locksmith when a good samaritan said he would call AAA for me. turns out, that good samaritan was also helping the gentleman who lent me his phone {who ran out of gas a few blocks away}. mr. good samaritan got some good points in heaven for his deeds today. 


mr. samaritan's wife stayed with me while the two men went to fill up the empty car. fifteen minutes later, a local tow company came and jimmied the door open. 


you weren't exactly calm the whole time. when i finally wrapped my arms around you, there were boogers and slobber covering you entire face and a good portion of your beautiful hair. 


i'm so sorry, little leah. sometimes moms do dumb things. i'm so glad you were okay. i really do love you...even if i mess up sometimes. and yes, daddy and i had a conversation about getting AAA today on the way home from work. he finally answered his phone.


you are my i love you. 

love, 
mommy


p.s. next car this family purchases, we are splurging for power locks, by the way.