you walker, you

dear little leah,

one year ago today, you took you first, real, unassisted steps...and kept going! and you haven't stopped since.

can you even believe it's been one year!?

it took you more than two years to get there, but you did it.

i'd can't say i look back on that second year of your life and laugh about it now. i can't say i wish i would have taken the advice of others and relaxed or not worried so much because you would "walk when you're ready." i'm actually glad i didn't take their advice. i'm glad i stuck to the feeling i had that something really wasn't right. we all {including you!} worked so hard to get you walking...and i think we did it just in time. it was within months of you walking that other things started to fall off the radar screen. i think had you not been mobile then, there's a good chance you wouldn't be running in and out of my bedroom right now.

you're a great walker. you're a great runner. your steps have so much life and bounce in them. daddy loves the way your bum wiggles to and fro as we watch your backside leave a room. i love watching you appear out of thin air as you run from one place to the next...and disappear just as quickly.

first thing in the morning when we get you out of your crib, you run. in fact, you run IN your crib. and don't think we can't hear you. we know you're not sleeping. our apartment isn't that big.

i love you, little leah. i love that you put so much effort into getting yourself mobile. it was hard work, but it was worth it. you're stronger than i can ever hope to be. here's to one year!!

i love you.

love,
mommy

p.s. for your viewing pleasure...a video of you taking your first steps: april 3, 2009 AND a video of you march 2010 running like a mad woman. this is what you normally look like...and i love the fall. you're like a cat. you always fall gracefully and climb right back up {with a friendly little slap on the ottoman}.

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one hundred three

dear little leah,

today you were so still.

and i mean really, really still.

we went to church and you just sat in my arms all cozied up. your hands were in the SAME position for the entire hour. {and if i could just figure out how to get a picture off my phone, i'd show you the proof.}

then i took you to nursery. usually you just love nursery. you're one dense ball of energy {little, but a lot} wandering the room for 2 straight hours. when today i put you down, you just hugged my leg. so...i took you to the table and we colored. you let me help you color. that is so not normal. when we finished, you just SAT in the chair for 10 minutes. also not normal. so i picked you up and we cuddled for the next 40 minutes or so until we dropped you off with daddy and all the other guys. he said you fell asleep in his arms. again, so not normal.

when we got home, you took an okay nap and woke up with a bit more energy. so, we went to dinner at jeff and sarah's {mmm ribs and potatoes}. you ran around with jack just like normal, so we thought you were on the mend.

then we took you to the park. you played for a bit with daddy, but then just wanted to cuddle, so he wrapped you up in a blanket and there you sat for about an hour! you started to feel kind of warm, so when we got you home, we took your temperature.

103.

yes, that's right. one hundred three degrees fahrenheit and your mother didn't even know.

so, we called the advice nurse {ahem, grandma hauley} and she reaffirmed my thought to put you in a lukewarm tub. i know what you're thinking: "THAT TUB WAS NOT LUKEWARM! YOU MADE ME SWIM IN ICE CUBES!" the aforementioned advice nurse used to make me swim in ice cubes when i was little too {she will deny it to this day}, but it works. you were back down to 98 when we got you out of the tub. we called a friend to come over so he could help daddy give you a blessing.

that's when you yacked. all over yourself and me. three times. poor steve just sat there patiently while we put you back in the tub and changed your clothes and blanket. daddy gave you a blessing and steve went home.

then you ralphed again. twice. so we changed your clothes and blanket again.

then it happened again. twice. so we changed you again.

you hadn't eaten all day, so there was really nothing to throw up. you looked so weak and tired.

the tub was full of your not-so-sweet smelling clothes and blankets and you were still feeling kind of warm, so we went and watched some movies on the couch. when you had consistently been about 99 degrees, we put you to bed.

poor thing.

you stayed home from school on monday and still wouldn't eat, but your temperature was back to normal and you were not so still.

i'm sad you were sick, but i have to admit i love that you were so still. you looked so calm and at peace - not tormented by those constantly moving hands or a body you can't control. you just sat. and cuddled. and rested. i'm sorry it had to take a temperature of 103 to help you rest. next time i promise to catch it before it gets that high. that way we can avoid the icy bath.

and maybe, just maybe, you can try a cuddle or two when you're feeling your best? just a thought.

love you.
love,
mommy

p.s. loving our new quick forehead thermometer. probably a top 10 purchase to date.

i feel blue

dear little leah,

i feel blue. {ten points to you if you can name the tv show.}not all the time, but i feel blue a lot of the time now.

now, before you go and get all self-conscious on me, let's get something straight: yes, you make me feel blue. BUT, it's not your fault. it's mine.

it's probably hard for you to understand. i barely understand it myself. but, when i became a mommy, i had so many dreams and pictures of the way your life would be when you were three. i envisioned you roller skating through the house on plastic fisher price skates. chatting up a storm. dressing up in tutus. reciting the alphabet. saying hilarious things and wondering where in the world you came up with them. talking back to me like a sass. not wearing a diaper. sleeping in a big girl bed. being a big sister. singing silly songs. choosing your own mismatched clothes.

sometimes i feel like i've had plenty of time to get over all of this. but i guess i haven't. some days i just feel blue. and blue has never been my favorite color {for the record, it's green}.

i think i put on a pretty good happy face. most people don't know i'm blue. or they don't know how blue i am. or maybe just how often i'm blue. don't worry. it's not depression or anything. lots of things make me happy {including you}, but i think i'm still kind of mourning for the leah i first envisioned. i'm still grieving for all those dreams i had. and i need to let them die.

this isn't to say i have no dreams or goals for you now. they've just changed. i get excited about the little things now, and that's probably not such a bad thing. i know you have a lot of potential. but, i have to admit, it's kind of overwhelming for me to try and figure out how to tap into that potential. i feel like i'm drowning in a blue ocean of information and ideas and at the same time i feel like the information i need is in a completely different ocean. i just need to find my way.

will you help me?

maybe just give me a big grin when you like the way i'm doing something. give me those little nudges of yours when i'm headed in the right direction. we'll make it. i know we will.

and someday {soon, i hope} i'll feel a little more green. like my favorite new dress for you. i love you to the moon and back.

love,
mommy

p.s. the tv show is friends.

um....

dear little leah,

i spoke too soon. please come back. we really do miss you.

love, mommy

home again home again jiggity jig

dear little leah,

welcome back. we missed you the past two weeks. you and your naps and your giggles and wonderfulness.

you've been kind of mean. and kind of tired. and kind of mean. oh, and kind of tired too.

but today you came back! we welcomed you with open arms.

today you said "puh, puh" when grandma said, "P is for..."

today you tinkled into the big girl potty {so says grandma... and i'm happy to take her word for it!!}.

today we had a dance party. that was some gooood dancin'.

today you loved school.

today you gave great kisses and hugs and smiles.

today you went up and down the steps like a champ.

today you babbled like it was nobody's business.

today...you came back!! thanks. you {the today version of you} are welcome here any time.

love you bunches.

love,
mommy

p.s. yes, i know the pictures are blurry. our dancing is just too good for grandma's camera.
p.p.s. you might be wondering if you'll ever have moves like me. i think you will. one day. just be patient. those kinds of skills take a long time to perfect. but it'll happen.

preschool

dear little leah,

today you finished your first week of big-girl preschool.the kind of preschool where the parents don't come with the students.

the kind of preschool where you could take the bus.

the kind of preschool that is 4 day each week!!

you looked super cute on your first day. new birthday shirt. crisp, white capris {that you scuffed on your way in - you were so excited you ran faster than your little legs could carry you!}. cute pink "nub-tails" (that's what we've decided to call them - they're a mix between nubbies and pigtails). fun new backpack. pink Velcro shoes.

everyone asked me how you liked it.

i wish i knew the answer to that question.

you couldn't tell me {in your cute little voice} if you had a good day or not. you couldn't tell me all about your new teachers and your new friends. you couldn't tell me all about art time or snack time or circle time. you couldn't tell me about the cool toys, recess, the books, the potty. you couldn't tell me if you felt happy, sad, frustrated, excited.

your teachers said you did well. they mentioned you seemed tired, but other than that, you were very cooperative. that makes me happy. four days a week is a lot. so you have been extra tired. so extra tired that you haven't sleep well at night and you barely take a nap. i'm hoping we'll all get used to this four-day-a-week schedule and our sleeping can get back to normal {again}.

it was a rough first day. and it's been a rough week. so it can only go up from here, right?

most of the time i'm okay with the fact that you are different. today i wasn't. today i cried. i cried a lot. i was so sad for the simple things we're both missing out on because we communicate differently than each other.

i'm sure you wanted to tell me all about your day. i just don't know how to hear you. i'm learning too. they just don't have a school for mommies, so i have to do it on my own.

so, we'll keep going to preschool. and kindergarten. and grade school and beyond. and hopefully, one day, you'll be able to tell me how your first day of school was.
i love you.

love,
mommy

advocate

dear little leah,

they say i'm supposed to be your advocate. your no. 1 advocate at that. i'm supposed to support you. defend you. plead in your behalf.

but how do i advocate for you when i'm not even sure what it is i'm supposed to advocate?

how do i fight for what you need when i'm not even sure what it is you need in the first place?

today daddy and i met with some people from our school district to figure out where you will be attending school and what kinds of services you will receive for the next calendar year.

i've been told that this first meeting {hereafter referred to as IEP}, the one where you turn three, is one of the most {if not THE most} important. i've been told that this first meeting can determine what services you will get not only for the next year, but for many years after that. i've been told that it's easiest to obtain services now, but oh so hard to add on to them later. i've been told that the people from school districts aren't going to want to pay for any of your services and so i'm going to have to fight, tooth and nail, for the things i think you deserve and need.

"don't be afraid to be aggressive," they said.

"make your demands clear," they urged.

so i went prepared. and i brought daddy along just in case i buckled. i brought all your reports. all your records. all the letters written in your behalf. i wrote up my own summary of you - your likes and dislikes, your strengths and weaknesses, your immediate needs, your long-term needs, a history of rett syndrome, services i think would help you, goals i felt were appropriate and achievable.

i had some help. a few other rett moms offered support and some brilliant ones posted tips on the internet. who'da thunk? other moms i know offered tips like putting your picture on the forms so people aren't making decisions about words on paper, but on an actual person {a cute one at that!}.

like i said, i went prepared.

and you know what? i think i opened my binder twice. and not even because i needed to.

the people in our district were wonderful. and i feel truly, completely blessed, once again, to be where we are.

they wrote goals with you in mind, knowing you are a bit different than others they have worked with before. they wrote goals that offer room to grow, not knowing what will be best for you. they suggested technologies that can be adapted to you. services that can be molded around you. programs that will fit your needs.

we didn't opt for the most technologically saavy program. i think it's safe to say you wouldn't enjoy being tied down to technology, literally. but we didn't low-ball it either. i think we found a pretty good medium that will make everyone happy...especially you.

daddy and i left the meeting feeling so good. we went in expecting to fight {nicely, of course} and came out knowing we are all advocates for you. we are all fighting for you and your education and learning and growth. we are all on the same team. team leah.

i like being on your team.

i'm glad others like it too.

goooooooooooooooooooo team!

i love you, leah beah.

love,
mommy

three

dear little leah,

today you turn three years old.

three.

as in 1,096 days old {there was a leap year in there}.

i know, can you even believe it?
i remember what it was like to not have you in my life, but i can't really imagine your absence.

i remember anticipating you arrival and wondering who you would look like, but i can't really imagine you any different than your perfect little self.

i remember holding your tiny little body in my arms and wondering how i ever lived without you. i still do that.

i remember all the little cords hooked to you body for you first four days of life, praying to Heavenly Father to heal your heart. He did. He healed mine too.

i remember dressing you in newborn outfits that were way too big. now your outfits just seem like they should be too big, but they fit! you've grown up into a darling little girl right before my eyes.

i remember the first time you walked all by yourself. i'm not sure i had ever been happier.

i remember the day we found out why you struggled so much each day. i hoped and prayed Heavenly Father had sent you to the right mommy. i'm pretty sure He did. i really needed you. i still do.

i love your smile. it melts me every time.

i love your eyes. they simply sparkle.

i love your laugh. it's contagious.

i love your legs. so slender yet squishy.

i love your abs. i covet them so.

i love your hair. so full of bounce.

i love your run. so full of life.

i love your nose. proof that you're mine.

i love your sense of humor. slap stick and silly.

i love your concern for others. pure and genuine.

i love your tears {only when i can wipe them away}.

i love you. all three years of you.

and i love being your mom.

happy birthday, beah.

love,
mommy

life is fragile

dear little leah,

today i was reminded how fragile life really is.

today my friend's little boy went back to his Heavenly Father.

it was very sudden. he got sick and everything went quickly downhill after that. and it made me so sad. i cried a lot today for his mommy and daddy. he was so little - not even two years old yet. and he was their only child. i can't even imagine how lonely they are feeling tonight.

sometimes i feel like life isn't fair...but i feel like it should be. sometimes i feel like some people just get the short end of the stick no matter how obedient they are. today i felt like my friend definitely got the short end of the stick.

and then i had some different thoughts.

i thought how celestial her little boy must have been to have only needed to be on earth for such a short time. i thought how wonderful my friend is for being entrusted with this sweet, celestial spirit while he was here. i thought how lucky we are to know that this sweet, celestial spirit is now in the caring hands of his Heavenly Father and he will get to see his mommy and daddy again.

this isn't to say it makes the sadness and pain and hurt go away. they are still here. i know they will be here for a long time to come. but, i'm so grateful for sweet little spirits and sweet little angels that we are entrusted with - no matter how long that may be for.

i'm grateful that you're my little angel and that i get to be with you, struggles and all, for as long as Heavenly Father thinks is needful.

i thought about how, at one point a few months ago, i felt like death would have been easier for our little family than what we were going through. i'm ashamed to admit it, but those were my honest feelings. i couldn't bear the thought of you going through any more pain than you were going through and i couldn't imagine how daddy and i could hang onto our quickly unraveling rope any longer. now, even though we still struggle each day, i'm so glad Heavenly Father didn't answer that prayer. i'm so glad he gave us the strength we needed to get through the darkness and start to see the light.

i hope Heavenly Father will bless this little boy's mommy and daddy with the ability to see the light even though they are surely experiencing their darkest moments right now.

i hugged you a few extra times today.

i sure love you, little leah.

love, mommy

sleepy head

dear little leah,

today you fell asleep at the table while eating breakfast.

for the first time. ever.usually eating keeps you plenty interested. and usually, if you're sleepy while eating, the end result isn't a bobbing head, but food strewn all about the kitchen.

i like this alternative better.

you were eating your cheerios like it was nobody's business. then you got slower and slower. and then you stopped...and closed your eyes.

sleepy leah makes me smile.

love you.

love, mommy

p.s. maybe this means you should go to bed earlier than 11pm and not wake up at 4am. lesson learned???

Photo and video editing at www.OneTrueMedia.com