one of those days...

Dear Little Leah, 

I did it again. I went and had one of those days. I'm tired. I'm emotional. And I'm just not perfect. 

I've worried a lot about you lately. A lot a lot. Your seizures. Your hitting. Your instability. And I fear I just don't know how to be your mom. I'm trying my best, I really am. 

I want what's best for you. But I'm afraid sometimes I don't even know what is best. 

And when I think I've figured out what is best, I don't know how to accomplish it. 

I truly believe you have untapped potential. But I don't know your limits or how hard I should push you to reach that potential. 

I know there are things I could be doing that I'm not. 

I know there are things I should be doing that I'm not. 

I know there are things I'm doing that I probably shouldn't be doing. 

And so I continue to worry. I worry about how life is going to change in the next few weeks and how it might affect you. I worry about how it might affect me and my ability to care for you. I worry about our girl's only summer and if I'll even be able to survive. But if I do, I worry that I won't have the energy to give you all you need with a new little one in our house. I don't want you or your needs to fall to the wayside, and I'm just not sure how to balance it all (after all, I only have two arms and you usually take up both of them). 

And so, put all those thoughts into a bowl, mix them up with my tears, fears and other emotions and you kind of have a wreck of a mom tonight. Sorry about that. It's just one of those days. 

I love you. Really, I do. Even though I made you eat all of your dinner and you didn't want to. 

Love, 

Mommy

little robin red breast

Dear Little Leah, 

This week in school you've been learning all about birds - specifically robins. We are under strict orders to keep an eye out for them so you can report back to your teacher every day and mark your chart each time you spot one. Up to today, you've seen 14. And today we saw 12 more!

You've colored robins, cut them out of construction paper and read about them. You've learned about their blue eggs and the home they call a nest. In fact, you even got to make your very own nest - with twigs and leaves and mud. I'm told you thoroughly enjoyed the mud part. I can only imagine. 

The other day as we were walking to the car, just before you stepped off the curb, you paused. Actually, you completely halted. At first I thought it was just your usual Rett syndrome pause where nothing in your body seems to work and you simply cannot move. But this was different. You weren't tight at all. You nearly bent your body in half just to stare down at the ground below. When I finally took the time to see that you were looking at something, I decided to take a look too. 

This is what was apparently so intriguing:

I wondered why in the world you might be so interested in a pile of leaves and dirt clustered in the corner after a long, cold winter. 

And then I remembered the robins. And their nests. And realized that maybe it looked like a nest to you. It did look ridiculously similar to the creation you brought home - it just needed a little blue egg. 

So I asked you, and again, your eyes spoke a thousand words. You thought there was a robin's nest on the pavement and you didn't want to step on it! So, we moved over a bit and stepped around it. 

Oh, Leah, what a fun gift for me! I got a glimpse of your five year old thoughts and it was amazing! And it also reconfirmed to me the fact that you are learning and growing and stretching that brain of yours in incredible ways. 

There is a lot to learn, Miss Leah. For you and for me. And I'm so glad you have such a hunger for knowledge. And are teaching me to continue to hunger for it, no matter how much I think I know. Learning and growing is the best kind of freedom, Leah. I know your body probably seems like a prison most days, but with knowledge you can truly fly, just like the robins. 

I love you, Little Leah. 

Love, 

Mommy

leahceratops

Dear Little Leah, 

For the past few weeks, you have been learning all about dinosaurs in your preschool class. You've come home with some fun facts and some amazing works of art. But your diorama tops them all. I was told you spent a long time painting the sky and earth, constructing the volcano, trimming the trees, adding the flora and building a model of the one and only Leahceratops. 

The dioramas you and your classmates created are all on display in the glass case at the elementary school - and believe me, that's a coveted case. All the students, parents, teachers and staff who walk in the main hall will get to see your masterpiece. 

I love that you decided the Leahceratops was a peaceful dinosaur. I can't imagine anything modeled after you being anything to the contrary. 

And as for the three horns, Grandma Hauley had a great idea: we'll be adding three beautiful ribbons the moment the diorama is sent home. I think its nickname will have to be Missribbonsceratops, obviously. 

I love you Miss Ribbons. And I love to see the results of your hard work each day. May your peacefulness and work ethic never go extinct. 

I love you. 

Love, 

Mommy

sending love, the old fashioned way

Dear Little Leah, 

While I was in Arizona, I found out that a special friend from California was sick. She was in our church congregation and she really liked you. She often remarked on your beautiful eyes and your contagious smile. And she was so sweet to remember you on birthdays and holidays - you've received a number of gifts and sweet letters from her {including a book and a hand-stitched ornament for Christmas this year}. 

I've been brought to tears on multiple occasions because of her kindness. 

But our friend got sick. Something happened in her brain and she had to go to the hospital. The doctors performed surgery on her, but I was still really scared. When I got home from Arizona, I told you about it first thing. And I asked you to pray. We acknowledged the fact that you can't say your words out loud, but Heavenly Father knows your heart and he will listen to and answer the prayers you have. 

And you know what, Little Leah? He did. He heard your prayer. The very next day I got an update that she was doing much better and is expected to make a full recovery. 

I'm sure the road will be long and it could very well be filled with speed bumps and potholes. But, I think in the end she really will be fine. 

When I asked if you wanted to send her a special card in the mail, your eyes spoke a thousand words. So, we sat down and created a special heart so we could send our love her way. 

 

You did a tremendous job gripping the crayons underneath my hand and you chose the colors all by yourself. I think the bright, cheery, spring tones are just what the doctor ordered. 

 

You're one smart girl, you know that? I think she's going to love it. 

Thanks, Little Leah, for sharing yourself and your love with others. You have a lot to offer. 

Love, 

Mom

five

dear little leah,

today you turned five years old. FIVE. um, that's half a decade and i kind of don't believe it. to be completely honest, if i think about the last five years in detail, there were some pretty loooooooong stretches in there {ahem, 2009}. but today, today it's like i blinked and you changed from the tiniest little 5 lb. 14 oz., 17-inch cherub into one of the most beautiful young ladies i have ever met.

you truly melt my heart, miss leah. you are strong and independent and STUBBORN {i have NO idea where you get that from?}, but i love it. i really do. i would so rather you be these wonderful things than their opposites. you know what you want and you are willing to work so hard to reach your goals.

for example, just this year you:

-learned to climb stairs. i'm not kidding. you have seriously blown my mind with this. first it was just one, then two and the next day, all 15 in our house. there are moments you look from the bottom stair all the way to the top and think you just don't have the energy to climb the mountain today. but you always do it. always. and it still blows me away.

-learned to give high fives. you mostly do this for daddy. but it is hilarious and heart-melting all at once. i love it.

-improved so much on the potty. really, you probably go at least once a day and you are getting so much better at telling us you need to go even if we don't ask {sorry, i'm so bad at that!}.

-decreased your teeth grinding quite a bit. it's not completely eradicated by any means, but you are much more aware of it. it mostly happens now when you are tired, but if i hold your cheeks or sometimes even if i just mention for you to stop, you will.

-improved leaps and bounds with your switch. you are getting so good at this, leah! i think we still have taylor swift to thank, as her music is often a reward for hitting your switch. we should write her a letter, huh? we owe that girl a lot. but your switch is really helping you communicate and do lots of things at school. using your scissors is a pretty amazing new trick for you as you have to hold the switch down {not just hit the switch} to continue activating the blade. it's so great to watch.

-gained 5 pounds. this is truly an accomplishment. at your five year check up you were 34 pounds and i had to do a double take of the scale. your bmi has shot up nearly two points {so no g-tube for you, missy!}.

-figured out new ways to communicate. your yes/no eye gaze is getting pretty great as well as making choices between a few options. and you seem to prefer to use your hands/arms when making a choice. we just need to figure out how to reign in the excitement.

oh, leah. i'm sure there's so much more that i just can't even think of right now!

you have a lot of favorites at the moment. your favorite tv shows are super why and the cat in the hat. your favorite movies are tangled and kung fu panda still, i think. but you have a great sense of humor and seem to love lots of different movies. 

your favorite foods are tomatoes and watermelon. you often choose a tomato for your afternoon snack - and you will devour it in no time flat! as for watermelon, this isn't new, but your love for watermelon certainly hasn't waned. you will eat and eat and eat and eat that red, watery goodness until you are sick. and actually, you won't stop there. i usually have to stop you. but i can't blame you, because i do the same thing. you usually have cheerios with vitamin d milk for breakfast {your choice!}, but sometimes we switch it up with eggs/toast/sausage {gotta get some meat on those bones!} or pancakes. you seem to have outgrown your love for oatmeal as a general rule, but you still choose it every once in awhile. in addition to your previous diet of chicken nuggets or quesadillas for lunch, you will now tolerate ham or turkey sandwiches and green salad {loaded with tomatoes, cucumbers and mushrooms}. this is a GREAT thing! you love tomatoes, clementines, apples, applesauce, peaches, pears, raisins and cheese for snacks. your appetite for beverages has thankfully increased this year as well. i used to be lucky to get one teeny tiny cup of something down your pipes once a day. but in the last year, you have learned to love all things water, milk, pediasure and juice. and you are still my little dipper - ketchup and ranch dressing seem to be continuing favorites. really, you are such a great eater. you will consume pretty much anything we put in front of you - or at least you'll tolerate it. from cous cous to salmon to curry and more, i know you are willing to eat more than the average five year old. hooray! {now if we can just make sure you pass this trait along to your little sister...}.

you are a master cuddler. i could cuddle with you all day long. you usually don't stop moving, so sometimes cuddling can be dangerous. but when you're sleepy you quickly scoot over to anyone who is nearby and snuggle right on in. this could be me, daddy, family, friends, teachers, neighbors...or even strangers, really. you are so loving.

you are learning to be more gentle. when you get excited, those arms go wild. and you're a strong girl, so it's not always the most pleasant thing to be in their way. we still haven't figured out how to direct this excitement in a more positive direction, but we're working on it...and just hope you don't lose any little friends in the meantime.

your least favorite part of the day is tooth-brushing time. we won't tell grandpa hauley.

your second least favorite part of the day is sitting still for me to do your hair {usually}, but when we talk about rapunzel and you see the finished product, you are usually very pleased with the results.

you love going to school. LOVE it. the kids in your class are simply fantastic and you seem to prefer the gentlemen. i don't blame you. they are super cute, aren't they? you are learning all sorts of things about the alphabet, letters, numbers, weather, the solar system and more, and you just soak it in. i get notes every day about what you did and what you were able to participate in. for a few months now, all of the good boxes are checked 99% of the time, meaning you are able to sit and participate for longer periods of time than just a few short months ago. go you. 

you have adjusted to "cold" weather like a champ. although this winter has been kind of a dud, you never complain when we have to put on your coat and snowpants and boots and mittens and neck warmer and hat. it's a lot of junk to carry around on your tiny little frame...but you do it. and you look so cute when you do.

you still love to read books. we are moving up in the world and have acquired some new chapter books including some from the junie b. jones series and more. this has been lots of fun for both of us. you could read for hours.

one of your major weaknesses is hitting. i think you love the sounds that come from hitting things really hard - like the stove and the tv. but this is not acceptable. which is why we got you a drum. that, you can hit. 

you love to dance and i often see you in the rear view mirror of the car bobbing up and down to whatever is on the radio. you even tolerate the rock dad listens to. you love to run and i still get a grin on my face when i see your tiny body dart through the house. you have greatly increased your ability to sit still for prolonged periods of time, especially when you know you're tired. you climb onto {and off of} the couch like a champ. you give hugs and kisses like it's nobody's business. we've been practicing our kindness on dollies in hopes it will rub off by may...we're still crossing our fingers. and you love to bake and cook with me in the kitchen - especially when we wear our matching aprons.

i love your excitement for life, your giggles and your sense of humor. 

but mostly i love you. to the moon and back. and i'm so grateful for every last second of the past five years you have been a part of my life. 

i really, truly, love you miss ribbons. 

love, 

mommy

keppra

dear little leah, 

just for the sake of an update, seizures still drool. they are the worst, don't you think!? i do. and i'm so sorry that you are the one who has to suffer through them. we've upped your dosage of keppra and it seems to be working, for the most part. the most part NOT being yesterday when you had your all-time high of 20. twenty seizures in one day {including four at night as i laid in your bed by your side}. even one wears you out enough to take a nap. so let's just say you and i did a lot of lounging on the couch. 

oh, little leah, you are stronger than you will ever know. thanks for waking up 20 times with a smile for my eyes and a giggle for my soul. 

you never cease seize to amaze me.

i love you. 

love, 

mommy

sdrawkcab day

dear little leah, 

last week at school, you had "sdrawkcab day" {more commonly known as backwards day}. my oh my did you fit the part. we're talkin' a turned around cardigan and some inside out french braids. you did everything backward at school, like free time at the end of the day and snack and circle at the beginning. the welcome board with your picture and all of your friends' pictures was on the other side of the room...and it was upside down! miss martin walked around backward looking into a mirror to see behind her. and to top it off, when i came to pick you up, you and all the other kids walked out to us...yup, backward. it was pretty awesome.

except for one thing: your personality fit the part that day too. you were completely backward. to keep things peaceful on the blog, let's just say we made a mutual decision to not be friends that day. i didn't like you one bit and i'm 110% certain you felt the same about me.

you kicked. you screamed. you hit. you bit. you pinched. you flailed. you gnashed. you did it all. 

and i, well, i screamed. a lot. 

i'm not here to say i'm proud of it, because i'm really not. but leah, you made me so angry! i was trying to be kind and do all the things i need to do for you every day, but i just wasn't getting the love in return. and it's hard to serve someone who isn't appreciative of that service. 

well, the day wore on, bedtime came and you fell asleep. i fell asleep a few hours later, crying. i was exhausted. 

the next day was better. much, much better. in fact, you had quite a few days right in a row that were downright awesome. 

and then backwards leah struck again. it was all too familiar. the kicking. the screaming. the hitting. the biting, pinching, flailing and gnashing. it was all back.

only this time, i decided that even though i had zero control over how you behaved, i had complete control over the way i did. and i chose to not scream. i chose to stay calm. and to give you the benefit of the doubt. i chose to speak calmly. and to give you lots of hugs when you cried. 

and you know what!? it made a difference. you were still kind of mean. but not nearly as mean as you were on the official backwards day. and that doesn't really matter. because it made a difference in me. at day's end, i wasn't nearly as exhausted and i had much better thoughts about you and about myself. i wasn't angry; i was proud of you for being you and dealing with it so well the other 99% of the time. i figured you deserve a day every once in awhile to just completely flip out. and if you're going to have to take it out on someone, i guess i'm glad you chose me. that shows me you're comfortable with me and you're willing to show me your true self - insecurities, frustrations and all. 

i really do love you leah. i know sometimes you probably think i don't show it enough, but i'm going to try my very hardest to remember this experience and to always treat you with the kindness and love you deserve. because you absolutely do deserve it. 

i love you, little leah. even when you're backwards. 

love, 

mommy

poop

dear little leah, 

you went poop. and potty. lots and lots of times. in the POTTY. congratulations miss! it was a rough year, but near the end, you really got the hang of it and seemed to be pretty pleased with your ability to control something in your body.

potty chart #3 earned you a date ice skating with dad on january 3rd. {i tagged along to snap some pictures, but i left the skating and strolling up to the both of you.} i think dad was nearly as excited as you {okay, maybe more} and you both had such a great time. we hope to take you again soon...on real skates. 

as for potty chart #4, you're basically rocking it right now. and you plan to have all 80 boxes stuffed full with stickers by your birthday. and i'm all for it. 

you, my friend, are amazing. and i love you. to the moon and back. 

love, 

mommy

what is acceptable and what is not

dear little leah, 

mom here. and i need to tell you what is acceptable and what is not. this time, in regards to school pictures. this?:

not acceptable. 

i know, awkward right? and you're not awkward. you're downright cute. you have eyes that glimmer and a smile that would stop anyone dead in his tracks. and you usually have great posture, so the slumping? it's gotta stop. the hair, however, is fine, thanks for keeping that under control.

now, there is a time and a place for goofy pictures. believe me, when it comes to those, i'm the queen. but school pictures is not that place. 

so thank you, for regrouping, allowing me to come along for retakes and providing your family with this instead: 

ah, much better. and very much acceptable.

yes, i understand you are in the process of flipping your head from side to side, but after 15 minutes of shenanigans, we finally caught you looking and smiling at the same time, so i'll take it. i'd much rather hang a picture of smiling-giggling-flipping-her-hair leah than i would of stone-faced-deer-in-the-headlights leah.

thanks, miss ribbons, for learning your lesson. next time i think i'll come along the first time 'round. 

love you, miss ribbons. especially the smiley you. 

love, 

mommy

documenting

dear little leah, 

i'm a document-er. my entire life, i've prided myself on journaling, scrapbooking, picture taking, letter writing, even blogging. i like to write. i like to record. and i'm usually pretty good at it. even the dumb, mundane stuff i did every day of my life from age 8 on. you can read about it all one day - i promise it's all in my journals. and then of course i record the juicy stuff. the holidays and special events and monumental occasions in my life. like when i met daddy. or when you were born. 

but i've learned as time has gone on, that sometimes i don't realize something should be documented until it's over. and then i look back for the information and it's nowhere to be found. this has happened multiple times with you, miss ribbons. we go to the doctor a lot, right? well each time they have me fill out a form asking when you did this and when you did that. well, some of these things weren't really on my mind at the time. i didn't know that i should be recording when you did certain things. sure, talking, walking, eating solid foods - we're good in that department. but there are so many other things that i just had no idea. 

even with your rett syndrome journey, sometimes i look back and think, "i really should have written this down" but at the time, i didn't know it was record worthy and so i didn't. i'm trying to be better. and this blog might be a venue for that in some ways, so be patient with me through the "boring" posts. but hopefully it will be useful information for both of us. 

today i got a phone call from one of you rett friend's moms. she had a question about eating. i thought and thought and thought and i just didn't have a clear answer in my head. and i knew i hadn't written it down. so i'm recording my answer now. because who knows what i'll remember in a year.

i love you, miss ribbons. and in reference to the email below, thanks for being such a stellar eater, even though i know it's more than difficult some days. you are a rock star. and i love you to the moon and back. 

love, 

mommy

 {mmm...spaghetti. january 2011}

C,
I'm so sorry you've been having struggles with feeding E! Ugh. I just wish the problems for all these sweet girls could STOP.

I'm trying to think back on our eating journey with Leah and to be honest it's hazy at best. I tend to try to forget the very worst, but sometimes I don't even realize things are issues until they are history and then I don't have it documented for these kinds of occasions! I'm learning. I just chatted with Ryan and we had the same thoughts, though, so here goes:

When Leah was first regressing (just about the same age as Emmy), she seemed to have more "Rett episodes" where she would kind of space out and not be "with us" (drooling included) - does that make sense? During these times, she definitely could not chew her food. And if she could chew it, she was super picky about what she would chew - we ended up cutting everything into very small portions and feeding her softer foods that she didn't have to work very hard for. Because if she had to work for it, she would just stop eating. (Not good for a sub 30 pounder!)

As Leah has gotten older, her eating has improved. Let's be honest. We have been super lucky in the eating department because there are truly very few foods Leah WON'T eat, but that also gives me clues as to when things are going awry because when she won't eat, I know it's not the food - it's that something else is wrong. In our house, we don't give 20 different options for dinner - we give one. She eats what we eat, or she doesn't eat. This might seem strange when we work every day to get her weight up, and there have been exceptions to the rule (she has a hard time with soups, she doesn't often like potatoes, etc...so in those situations, we offer her alternatives), but I feel like setting these ground rules makes for a better eater in the long run. This might not be related to your problem at all, but I've always tried to weed out different reasons as to why Leah isn't eating or why she is struggling with her eating and I think this rule has made her tolerant of lots of different foods.

We still cut up lots of her food because she has a hard time chewing on her stubs of teeth, but she will chew. We've also learned she prefers the left side of her mouth, so we often feed her on that side of her mouth and we have more success (she spits out her food less and she actually chews it rather than just letting it sit and get soggy...so gross). This could be because it's less sensitive and maybe hasn't been ground down as much as her right!? Who knows. We definitely don't.

Also as Leah has aged, she has increased the amount she drinks. For awhile, I was lucky if I could get one tiny sippy cup (like a really tiny kids cup from IKEA) of liquid in her body each day. She just wouldn't do it. Now, if she's thirsty (and she usually is), she will pound multiple cups every day - of lots of different drinks. So, because of this, we try to give her pediasure and other drinks that count. She does love her some water, though. A girl after my own heart.

My two best pieces of advice (and remember: I'm no expert NOR am I sure that what you're having trouble with is the same as what we struggled with) are:

• 1) Give her TIME to eat. Even when Rett episodes are present and perhaps common, Leah just needs time. Sometimes she's ready to go right when we sit down. Like last night I described her as an animal. She was seriously voracious with that soft taco. It was incredible. Other times (like tonight), she needs some time. Ryan and I sat there and ate our dinner trying to feed her intermittently, to no avail. After about 10-15 minutes she was ready and she ate her dinner. Not a ton, but enough. This rule is especially true in the morning. I find that we're often rushed in the morning, so we run downstairs and try to cram the food in super fast before school. This doesn't work for Leah. Sometimes she needs a good 30-60 minutes after waking up before she is ready to eat (she's so Ryan's child in this area...I need food ASAP!). 

• 2) Don't base her food intake on one day. She just might not be hungry one day! I try to look at her food intake over the course of a few days and it has always averaged out. 

She could be in a slump and I really hope it will get better. I can't say it will for sure, but it has for us...and I hope it stays this way! In the meantime you could try high caloric drinks, softer foods or cutting the food up...and definitely giving her time to get it all in. Some days I wish for Leah to have a g-tube so we could just give her what she needs when she needs it. But I definitely know that's not a cure-all and comes with a whole load of other problems. So, I am truly grateful that Leah has maintained the skills that she has and I'm working on my own patience to go at her pace and do it her way, not mine. Sounds like you're doing the same.

Good luck! And give that girl (both of them, actually) a hug from us!

...maren