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