Sunday, August 14, 2011

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. 


  1. My eyes have welled up with tears...these children are so precious...and Rachel is a.m.a.z.i.n.g.

  2. That is a really good way to explain it to my young kids that don't understand. I have a niece with Rhett and she is amazing.