ho ho ho

dear little leah,

thanks for making my holidays merry. more on that to come.

but for now, i love you.

love,

mommy

dear santa 2010: a letter from leah

dear mr. claus,

hi santa. it's me again, leah. full name: leah licious karen stinky danger layton. this is my fourth letter to you, so i think we're on a first-name basis, but i know you visit lots and lots of kids, so i just wanted to make sure.

anyway, i just wanted to give you an update on my highs and lows this year. overall i've been a good girl, but i believe in full disclosure. let's start with the bad {hopefully you'll forget about it by the end of this letter}:

first, i have a temper. man, can i throw a doozy of a tantrum. but, for the record, i'm three. and aren't a few tantrums allowed when kids are three? i haven't checked the official rule book lately, but i'm pretty sure they are. i kick and flail and bite and hit and scream. i'm mean, mean, mean. mommy and daddy are trying to teach me that anger isn't the best way for me to communicate, but i'm only three. i'm still learning. the biting is definitely waning. i've stayed away from furniture and people {for the most part} for months now. hitting has mostly taken the place of biting. i'm super good at whipping my arms around like a windmill and let's just say it stinks for whoever is in their path. i'm quick and i'm strong. but i guess hitting people with my braced propeller arms is bad? i'll try to stop.

second, sometimes i'm lazy. i know, i know, laziness shouldn't really kick in until my teenage years. but sometimes i don't like to do the work it takes to learn how to use my spoon or to bite my food when it's not already in small pieces. i don't always love to walk up and down stairs {mommy's always saying she needs to work out more, by making her carry me i'm just helping her with the weight training part}. sometimes i just close my eyes when i don't want to do something. this is partially good and partially bad. mommy says closing my eyes and taking a break is a much better option than the aforementioned rage, but she also says i still need to work. i say work shmirk. i've got the rest of my life to do that. let me be a kid! plus, it's not fair. i have to work so much harder to do even the smallest of normal things. but i'll keep trying.

third, i kind of don't like to sit still. ever. anywhere. mommy and daddy really want to take me places {like the movies or to dinner} but i just won't have it. if they try to make me sit, i wiggle and wriggle until i set myself free - or i scream until they set me free. i'm working on it. it's a goal at school to sit for longer periods of time and i get better every day.

fourth, i'm a terror at the table. a serious terror. it kind of has to do with not wanting to sit still and it kind of has to do with not wanting to work so hard. but mommy and daddy really don't like when i paint the kitchen with cereal and spaghetti and salad dressing and saliva. i try to tell them it's art, but, unlike the food i toss, that doesn't usually fly.

fifth, my tiny little fingers won't stop moving. oh, i know i can't help that - that's not the naughty party. when i'm snapping i often walk up to dad and my busy little fingers get all tied up in his arm or leg hair. he says it really doesn't feel very good. but it's so tempting. plus it makes mommy laugh. but i'll work on that too.

okay, i'm getting carried away. enough with the bad. onto the good!

first, i'm still walking. i work hard at it every day. i walk, i run, i crawl, i climb and i'm keeping my muscles strong.

second, i'm gaining weight. the doctors told mommy she had to help me gain a pound a month until march and so far i'm doing it. i totally just let her feed me butter and cheese and milk and avocados and all sorts of yummy things to make me chubby. okay, not chubby...just a little more than skin and bones. other than my food flinging or hand whipping at the table, i'm a great eater.

third, i'm so good at following directions. whenever my body will let me, i come when i'm called, i can sit down for mommy or daddy to put on my shoes, i climb into bed, i put my hands down at the table {even if i have to be asked hundreds of times a day}, i close my eyes at bedtime, and all on command! that's pretty amazing for a girl with severe apraxia. double points.

fourth, i give great kisses, hugs and cuddles. i'm not sure how it works, but no matter how big i get, i fit perfectly in mommy's and daddy's arms. like a glove. my hugs melt them, they relish my cuddles and the kisses evoke enormous grins.

fifth, i don't mind when mommy and daddy brace my arms. i've actually figured out how to maneuver around with robot-straight limbs. that's pretty awesome for a three year old.

sixth, i'm pretty good in the car. actually, i'm really good in the car. i either chat {in leah-nese, of course} or giggle or sit ever-so-silently. sometimes i blow enormous amounts of boogers out of my nose and mommy can't get to me immediately, but it's pretty funny so you should let that slide.

seventh, and i'm not sure why i didn't mention this earlier, but i'm learning to go potty like a big girl. this is HUGE for me. i'm not sure if you know much about rett syndrome, but it's really hard for me to control my body. so to sit on the potty and actually get my body to work correctly at the right time is down right amazing. yup, i'm amazing. i've filled up two potty charts already and i loved the prizes so much {mostly my date to the zoo with dad} that i'm still making progress!

eighth, i work so hard in school. my teachers love me to pieces. i'm learning all sorts of things like letters and colors and shapes numbers and the weather. i work hard in occupational therapy and with my communication specialist. i look cute every day {which means i let mommy dress me and do my hair}; so cute in fact, that i've earned the name "miss ribbons" and i get comments on my cuteness daily. i'm a great friend to everyone in my class. i give them nice, gentle pats and they give me sweet hugs. i've learned how to move my body to say "hi" to people, i've held onto my marker and colored for prolonged periods of time {as much as 23 seconds at a time!} and i love to dance. my teachers say i'm making great progress and i'm usually happy as can be while there.

ninth, i let people wipe my nose. let them. yah. i don't shy away or run and hide. i do occasionally wipe my nose on them before they get to me with a tissue, but i'm really getting good at clearing my nasal cavity and letting others dispose of the waste.

tenth, and my final point for this letter, my sleeping is back on track. no more mid-night scream fests. i often fall asleep within minutes of mommy or daddy reading to and rocking me. and, to top it off, they started to wean me from my sleeping medication last month and haven't given it to me in probably two weeks. no problems. oh, they were worried. they were scared to death to wean me. but i took it like a champ. if i get

out of bed, i can usually calm myself down and either find my way back into bed or just find a comfy spot on the floor. i let them sleep until at least 7:00 every morning and i let them know i'm ready to escape from my quarters by politely banging on my door.

so, mr. claus, as you can see, the good outweighs the bad two times over. i'm twice as nice as i am naughty. and i only get better every day. i don't want a lot. i'm pretty easy to please {plus, i can't play with most of the plastic junk they sell in stores}. i'd love a pair of roller skates {mom can give you the full story later - 26 years in the making}. i'd also love anything princess or anything to entertain me on the tv. also, i have a rough time calming my body down, so i'd love a weighted blanket {but could you specially make it for me with cute fabric?}. i'd also love some music. i love to dance. i'm sure you've seen my moves.

that's all. thanks mr. claus! it was fun to see you today.

sincerely,

leah

p.s. we got some carrots for the reindeer, and are hoping you'll like them too. mommy says you could afford to lose a few l-b's. if you're worried about them not having enough flavor {like me - i'm a total dipper}, we'll leave a little bit of ranch dressing in the fridge. mommy sometimes makes it with my vitamin d milk. it's a.ma.zing.

Make an on-line slide show at www.OneTrueMedia.com

there is sunshine in my soul today

dear little leah, 

today is a good day. there is sunshine in my soul. it's a bit gray outside {which i love}, we have plans to go see the infamous christmas tree lane in a neighboring city tonight with friends while enjoying hot cocoa and doughnuts {yum!}, you are sweet as can be {lots of hugs and snuggles and giggles today!}, and a dear friend sent me the following in an email earlier this week. she was teaching a primary class {young children} at church and she said the manual suggested to share the following story:

"Tell about a girl named Heather Erickson. She had such a severe disease that she had very little control of her body. The only way she could communicate was by her family asking her questions. If the answer was “yes,” she would look directly at the speaker, and if the answer was “no,” she would blink. Heather and her family became very good at communicating this way. Heather’s special love for Jesus, in spite of her physical handicaps, was often expressed in her communications. One day her speech therapist asked Heather what her favorite song was. Heather became excited and was anxious for her therapist to know what song it was that she loved most. After three days of searching and asking questions, the song was finally identified. It was “There Is Sunshine in My Soul Today” (Hymns, no. 227).

"The last two lines, 'And Jesus listening can hear / The songs I cannot sing,' was Heather’s favorite part. Her therapist asked, “Heather, is that it? Is that what you like about the song? Is it what you want me to know? That Jesus is listening and He can hear the songs you cannot sing?” Heather lifted her head and looked her therapist straight in the eyes with excitement and yet almost relief evident on her face. The testimony had been borne. (Adapted from Bruce and Joyce Erickson, When Life Doesn’t Seem Fair [1995], pp. 49–55.)"

my friend then went on to say, "The children were so very fascinated with the girl in the story and they just wanted to talk about her and ask me questions about her and about her disease.  The lesson gives very little detail about all that stuff, but I told them that I did know a girl who couldn't speak or control her hands to learn sign-language, but was still very smart and had to communicate with her eyes.  Later that night "There Is Sunshine in My Soul Today" came on and it made me think of Leah.  That song used to make think of the MTC, but now I think it will forever remind me of your sweet little girl."

i actually found myself weeping in the middle of church a few months ago as i sang that song. i'd never thought of it in relation to you, little leah. and that day, it just really struck me. Christ does hear you. He does care about you. and He knows exactly how you feel. i hope you know that, little leah. and i hope you always remember that. thanks for helping me - and others - to remember too. 

i love you. 

love, 

mommy

broken

dear little leah, 

well. you finally did it. you broke me. 

i actually walked out of a store today with tears streaming down my face. 

i thought it would be fun to take you to costco to pick up some pictures and then treat you to some pizza and frozen yogurt. you thought it would be more fun to hit and scream and bite {you even broke the skin}. 

i was patient. i calmed you down each time you flipped and i kept a smile on my face. sure, i was getting tired of it, but i tried to give you the benefit of the doubt. maybe you had a hard day at school. maybe you didn't sleep well last night. maybe i was feeding you the wrong things...or the right things just in the wrong order. i'll never know. 

but after a few unsuccessful swipes, you reached as far as your little braced arms could reach and you grabbed the pizza plate. 

it went flying. all over the table. all over the floor. all over me.

luckily no one was sitting extremely close to us {probably because of the previous screaming, hitting and biting episodes?}, so they were safe from the pizza's - and your - wrath. 

i, however, was not. 

i picked you up off my lap, sat you on the bench, and began to pick up the pieces of pizza. only i was breaking into pieces too and i wasn't so good at picking those pieces up. i felt a warm tear well up in my eye. i tried to suck it back in, but it burst out. and slowly, one by one, more tears came to join the party. i threw away the plate and what was left of the pizza. more and more people started to stare. i tried to not make a scene. i wasn't sobbing. i really tried to keep my composure. and i didn't even yell at you once. i just cried. there were probably 40 eyes on me when i finally got you in the cart and wheeled you to the exit. 

i let you know how i felt when we got to the car because i thought you should know. i don't know if you can help it or not. i think today, you could. you really calmed down once the tears came. and to be honest, i'm not too sorry about it. your behavior was absolutely unacceptable. and it makes me sad that it took my tears to snap you out of it. 

i know it's hard, little leah. but we've got to keep trying. i don't want to have to avoid public situations for the rest of my life. i really want to be able to treat you to a slice of pizza and a frozen yogurt without being punished. i really, really do. 

i'm sorry that you went straight to your room and will stay there until your play date for piano this afternoon. but, it's better for both of us. 

today was a bad day. 

tomorrow will be better. 

i still love you. 

love, 

mommy

p.s no pictures of the fiasco. usually i don't mind getting a snapshot or two, but the tears made me move quickly.

p.p.s. i'm thinking of making an online purchase for myself this afternoon to console me. do you think i deserve it?

school pictures

dear little leah,

well. here she is. your very first school photo. a smashing success, if i do say so myself. 

you picked out your outfit. you agreed to your hairbows, but i chose the hairstyle. the perfectionist mother in me wants to comb your bangs straight, but let's be honest - we know there's no perfectionist in me. you're looking at the camera and smiling. at the same time. it's a christmas miracle! i'm more than pleased. probably the cutest preschooler i've ever seen in my entire life. thanks for humoring me and making this first-ever one i will treasure forever. 

love you, little leah. 

love, 

mommy

yuck

dear little leah, 

thanks, but no thanks. 

love, 

mommy

out of sorts

dear little leah, 

this weekend was great. and it was awful. both at the same time. 

we spent the extended weekend with family in the l.a. area. you met your great aunt karen and your new cousin, cannon, and you got to catch up with cousins kenz and e, uncles dan and ed, aunts kelli and heather and grandma and grandpa hauley. we were only missing the csk's. 

you did okay in the car. you didn't really sleep, but you were happy to look out the window, i guess. and then when we got to their house you turned into a monster. really, you did. you looked like a sweet little girl, but you behaved non-human. see?

there was much screaming and thrashing and drooling and yelling. your poor mouth is a train wreck of sores. we had to double brace you the entire weekend. we've barely seen those things in a month and you had them 24/7. you flailed your arms and food went flying at mealtimes. we went on lots of "walks" just to get away. daddy has a bite mark on his arm as a memento of the weekend and you're lucky i didn't hit you back for as many times as you swiped at my face. oh yah, and you pooped all over my shirt. thanks for that.

maybe you did it to get us some sympathy? you were trying to let others see how amazing mom and dad are for dealing with you all day long? but that's not really fair to you. you have your moments, sure. but we know you're a sweet little girl at heart. you like to giggle more than scream, smile more than slobber and behave more than tantrum - i know that. 

maybe you wanted room to roam? quarters were a bit cramped, but we can't expect d and h to rent a bigger house just for us to come visit them once a year. ca rent is pricey, friend. plus, it was our stuff that was cramping everything. 

perhaps you were just behaving like a regular old three year old? that could be very true. and if so, i'm sorry for calling you out on it. you deserve to be three.

problem is, i'm pretty sure i'll never know why you were so ill-behaved this weekend. i didn't like it one bit - let's make that clear. and i think you're now back to your regular self. we just checked on you in your bedroom and you were sleeping on the floor right next to your bed. that seems pretty normal to me. let's hope normal is the case. 

otherwise we might not be invited back to visit. and those cousins of yours are much too cute to not visit ever again. 

i {still} love you. 

love, 

mommy

all for nothin'

dear little leah, 

we worked hard all month to fatten you up. one pound. that's all i wanted. you did great. you ate everything i gave you. 

and then you got sick. 

and didn't eat anything for four days. 

so much for trying to fatten you up. 

here's to hoping the two hamburgers we gave you last weekend and the quesadilla {with extra cheese}, dipped in avocado and ranch dressing {made with full fat mayo and vitamin d milk} for tonight's dinner will work wonders. 

love you, little leah. 

love, 

mommy

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. 

love, 

mommy

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. 

love, 

mommy

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.

love, 

mommy

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. 

love, 

mommy

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.

love, 

mommy

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.
love,
mommy

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.

love,

mommy

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.

love, 

mommy

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. 

love, 

mommy

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. 

love, 

mommy