an old letter

dear little leah, 

as i was cleaning out before we moved, i stumbled upon a piece of scrap paper i used to scribble some thoughts last summer. and, as i still have some of these thoughts every day {multiple times every day}, it was still applicable and i should record it here. the note is unfinished, but i still like the message. 

{summer 2010}

dear little leah, 

today while you were at school, i went to the park. a first for me without you in tow. i was watching two of your sweet friends while their mom volunteered at their big sister's school. i was fascinated at the way these two girls {ages 2 and 4} were able to move and control their bodies. 

twisting, bending, hanging, swinging, climbing, building, sliding, flinging. 

i had a glimpse of understanding as to why most moms have to take their kids to the park at least once a day.

the imagination and creative play ran rampant. the tricks and twirls were endless. if the girls wanted to climb, they climbed. if they wanted to swing, they swung. if they wanted to build, pretend or slide, they did so. 

they didn't need any help from me. their bodies just worked. and it made me oh so sad for you leah. 

i'm sorry if i make you climb when you want to swing or slide when you want to build. it's up to me. and i'm...

that's all. i know. totally unfinished. but i didn't want to continue the letter as i don't know what i would have said then. i know what i would say now, though. i'd say that i'm not you. i don't know your silly thoughts or your silent dreams. i don't know what you truly enjoy or what you utterly despise. you're a really good sport and you just kind of go with the flow. for the most part, you seem so comfortable in your own skin and i'm really really grateful for that. but i still long for you to be able to do whatever it is you want to do. to say whatever it is you want to say. to be whoever it is you want to be. i'll keep working on it miss leah. i'll keep working.

i love you. to the moon and back. 

love, 

mommy

what. a. day.

dear little leah, 

what a day. what a two-days, actually. yesterday i basically threw in the towel. i was done, done, done being a mom. i was done being a wife. i was done being me. i was frustrated with nearly every aspect of my life and just felt the walls crumbling down all around me. it was a bad day from start to finish. just ask dad. 

i've tried ever so hard to help you out on the potty. and yesterday, after we sat there, two different times, for 20-30 minutes each and you told me you were done, we pulled those pull ups over your tiny little bum cheeks and then you pooped. yup. twice. you knew. you knew you weren't done, but you knew i'd trust you when you stared at me straight on with those beautiful blues when i asked if you were. and then you knew you'd go as soon as you got off. 

i know you don't have control over most aspects of your life. and my thought is that this is you taking control over something. and so i threw in the towel.

that was just one of about a bazillion things that went wrong. 

and then i got an email from grandma h. one of those emails you don't want to get when you're in a bad mood because she said all the right things to make me feel better about myself and the situation. but i still wanted to be in a bad mood. i wanted to pout. the email did make me feel a teency bit better. but i still chose to pout. don't hate me. sometimes i just need to pout.

today i met with the directors and teachers at your new school {another post for another day}. it went great. fabulous. fantastic. couldn't have asked for a better meeting and i'm actually excited for your iep next week. i know. whoa mom. calm down. but i am! it's going to be a good year. 

but then tonight i held tight to a screaming, kicking, hitting, flailing, wailing, teeth-gnashing leah and had no idea what was wrong. just another kick while i was down. a little salt in the wound. knowing that anything could have been wrong - tummy ache, headache, bad day, hair in your face, too hot, too cold, whatever - and i'll never know. i have no way to get inside your little mind and hear those thoughts that i'm sure are bursting at the seams to come out. 

i'm just done with today. i hope that's okay. we'll try again tomorrow. 

love, 

a-not-so-good-mommy

in the spotlight - tyler style

dear little leah, 

today in church, daddy and i were asked to give a spotlight on YOU. you know, your favorite color {purple}, movie {kung fu panda} and things {babies, people, school, etc.}. we were also told to tell the other kids a little bit about rett syndrome - how it makes you different from them and how you are still the same. 

so, naturally, i asked my lovely friends to tell me how they explained rett syndrome to their kids. kind of ironic that i'm the one that is supposed to explain everything and i'm the one who has no idea how to do it!

a few of them emailed me with some great tips and questions their kids had had at some point. but tyler's mommy's email made me cry. a happy cry this time. but i cried when i read it and i cried when i told others about what he said. and since there's no way i can sum it up as well as she wrote it, i'll just cut and paste:

"When Leah was born, her body was working just great.  But as she got older, suddenly, her body wasn't working just right.  

"One thing that stopped working was Leah's mouth.  When she was a baby she could say mama and dada, but suddenly her mouth didn't know how to work.  She would want to say "I am hungry!", but her mouth didn't know how and so she could say it.  Wouldn't that be so hard??!!  But Leah is super smart so do you know what she does?  When she wants something, she uses her eyes!!  If Leah wants a drink of water, she will look right at it.

"Or if she wants a bite of apple, she will look right at it.  But if you ask her if she wants a bite of applesauce and she looks away...that means she doesn't want it!!

"Other things that stopped working right were Leah's arms.  Leah loves to say hi to her friends, but her little arms just don't know how.  They wiggle around all the time but they don't know how to sit still in her lap or pick up a toy or hold a cookie.  Wouldn't that be so hard?  But little Leah is so smart that she figured out a way to say hi.  Sometimes Leah walks right up to you and puts her hand on you!!  That is how Leah says hi!  It might seem like she is hitting...but she really isn't.  Her body didn't mean to hit you she was just trying to say hi.
 

"In Primary class the one time I was there, after we talked about how Leah's body was different, I said a few things that were the same and I think the kids really loved it.  They each picked something that looked the same (i.e. long hair like Ali Hepworth or stuff like that). They were so cute.  We talked about how Leah smiles like us and giggles like us.  We talked about how she sometimes feels happy like us and other times when she is sad and cries.  (My favorite part was at the end when Ty announced to everyone that it was ok that Leah's body doesn't work now because when she gets resurrected her body will work perfect!  I think that Karen and I both started crying then :)"

And then, after that incredible email, she sent me this one:

"Ty just came in and after I told him what I was doing he said he wanted to say this:

'Leah needs extra love from everyone.  She will cry if she needs something and then you just ask "Beah do you want water or a snack??"

"Leah loves to have me take care of her and to wear my raccoon hat.  Heavenly Father is so sad if we are mean to Leah.'"

oh leah, i love that little ty for reminding me about the simple yet important things in a way that seems much too eloquent for such a small boy. and then i'm reminded that friends like ty were placed in your life for these very purposes. 

love you, miss ribbons. 

love, 

mommy

"i love you" this much!

dear little leah, 

we made it to new hampshire! that was a long week and you, my friend, were ridiculously good. no four year old should behave as well as you behaved when stuck in a car for 53+ hours in one week, and yet you did. amazing. 

before i give a real update on your life the past two weeks, i wanted to jot down something you did yesterday that basically melted my heart. you see, when you stopped speaking, i got sad. really sad. and one of the reasons i got so sad is because, although you had had lots and lots of words that i knew i'd never hear again, there was one thing you hadn't yet learned how to say. so even if i wanted to go back and watch a video or replay this phrase in my mind, i couldn't. that phrase, little leah, was "i love you."

i had lots of people tell me that you loved  me. and deep down i knew you did. but i just wanted to hear it from YOU. i wanted to hear that darling little voice echoing from that squishable face those three coveted words. 

we've been working pretty hard on your eye gaze and you're getting better and better each day. but yesterday, you nearly outdid yourself. we were relaxing on the stairs and i turned to you and said, "leah, do you know how much i love you? i love you sooooooooooooooo much. probably this much {as i reached my arms out as far as they could go.} i love you to the tippies of my fingers. even more. i love you more than this much!"

and then, i asked you, "leah, do you love me just a tiny bit? maybe this much {as i pinched my forefinger and thumb as close together as they could possibly go without touching}?"

as i did, you turned your face away from me. zero eye contact, sir. 

and then i asked, "oh, well, then do you love me thiiiiiiiiiiiiiiiiiis much {as i stretched your arms out as far as they could go}?"

and at that moment, you whipped your head around and looked me square in the eye. i saw the twinkle and i heard the giggle. and you stared and you stared and you stared. 

so i asked again, "so leah, you just love me this much {thumb and finger pinch}?"

you looked away.

"oh," i replied, "so you love me thiiiiiiiiiiiiiiiis much {tippies of fingers stretched to the max}!?"

beautiful blue eyes staring straight into mine. 

oh leah, you have no idea. it was better than hearing the words. i heard them in your very own way. and i crumbled. i do love you thiiiiiiiiiiiiiiiiiiiiiis much and more, sweet leah. that is for sure. 

love, 

mommy

p.s. thanks for showing daddy how much you loved him this morning too.

mama

dear little leah,

there's not much that thrills me more than when i hear your little voice. usually it is in the form of a giggle or squeal. sometimes a cry. but i still love your voice. and this morning, when we heard you stir, dad went upstairs to get you. he brought you down to where i was still in bed and i greeted you with an excited, "hi leah!".

to which you replied, "mama!"

yup. that's my name. and please, feel free to wear it out as much as you'd like. i'll never get tired of it.

i love you little leah, and i love that you're mine.

love,
"mama"