Thursday, September 9, 2010


dear little leah. oh, my sweet, little leah.

you want to know what i hate most about rett syndrome?


really, i hate surprises for pretty much anything in life except october 8th and christmas morning. those i can handle. other surprises? they basically make me hyperventilate with anxiety. ask your dad. he knows. and those surprises are usually good surprises.

rett syndrome surprises are a completely different monster.

for about a month, you've been awesome. i've seriously been counting my blessings. thought maybe we were turning a corner. you've slept well, eaten well, moved well. you've been a completely "normal" girl other than your hand function and your speech.

well, this morning, i re-realized how little i really know about what goes on in your little body and what could happen to you at any moment...i was caught by surprise. {remember: i hate surprises.} you woke up screaming your sweet little lungs out. i raced into your room only to find you wedged between your chair and your bed, sprawled spread eagle on the floor. your head was partially under your bed, so i think you hit the siderail on your way down. hence, the screaming. i just about lost it, leah. it made me so sad! so sad that you could be walking around your room and then your own body could take you by surprise and turn on you like that. we cuddled and you fell asleep in my arms for another 45 minutes. i had to wake you up to go to school, and all morning i was caught by surprise.

the eyes rolling to the back of the head.

the pablo the penguin wobble.

the mouth stuck open with drool spilling out.

the stiff arms and legs.

the unsteadiness.

the hunched back.

the breath holding and rapid breathing.

and the worst? the vacant look in your eyes.

i know you're in there. i know you get it. and i want to curl up in the fetal position and cry crocodile tears when i feel like you're not totally here. with me. i try not to think about you not being here. i really don't like that vacant expression. but i also try to not think about you not being here. i mean on earth. with our family. i know it's a possibility that you can be taken from us at any moment. taken by surprise.

i hear of little girls, just like you, having a great day and then leaving us in their sleep. and it nearly knocks the wind out of me. i'm often left breathless. i can't imagine the hole you would leave in my life.

rett syndrome is taking too many girls from us. and it must. be. stopped. no more surprises. only progress. only treatments. only therapies. only cures. only you and me and daddy for a good, long time.

that's a surprise i could handle.

i love you.



  1. I, too, want to ball up and cry with you. What a sweet, sweet post to a sweet, sweet girl. She is a lucky little one to have a Momma like you. I hope you know that...

  2. Maren, this is really scary. No more surprises. I will keep Leah in my prayers.

  3. Big hugs MJ and I hope tomorrow starts off better!

  4. can we eagle drop surprises? cause SURPRISE, aunt kelli is bawling right now... leah, i know you can hear me so listen when i second what your momma said, no leaving us by surprise ok? i'm NOT okay with that surprise. love you so much bean.

  5. Oh, I've been a mess all morning and this just contributes. Leah, hang in there, please. It's not bit. But do what you can, ok? You're little body is imperfect, but do you know how much you give us? It's perfect. The faith, the hope, and love. You are a gift. A scary one at times, but girl, you are one special baby girl. You're always in our prayers.

  6. Can't stop crying. I hate it all too. Keep fighting little Leah, your cure is coming!!! Much love!

  7. leah your mommy's posts really hardly ever make me cry like that. like sad crying. but this one did. i hate all surprises and especially rett surprises. we are going to get you girls all fixed up. soon. i promise!