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