you are blessed because...

Dear Little Leah, 

Today was the primary program in our new ward. You. Were. Awesome. 

I have to admit, dad and I were skeptical as we both spent a practice session with you during the past few weeks and you just couldn't hold still. You yelled out in the microphone so your part was inaudible and you simply had a hard time. 

But today - performance day - you were amazing!

You very reverently walked up to the podium with me, pressed your yellow switch with your chin and waiting quietly and patiently while your part was played. 

Your speaking part was to answer the question, "I am blessed for choosing the right when..."

"I am blessed for choosing the right when I choose to show kindness to my baby sister. When I am kind to her, she is happy and likes to be with me and smile at me."

Thank you for choosing the right, Miss Leah. It blesses us all. 

Love, 

Mommy

trouble

Dear Little Leah, 

No, this post isn't about YOU being Trouble. Or being IN Trouble. It's about you LIKING Trouble. The game, that is. You're good at it too, so it's no wonder you like it (I've still never beat you!). But...you also like to whack things (you're good at that too...) and the board gets all mixed up.

In a moment of pure genius (moms are smart), I thought that maybe I could try putting magnets on the Trouble board and pieces to get them to be a little more stable. 

It totally works. 

I'm really smart, you know.

You are too. 

Thanks for liking Trouble. I love finding things that you like. 

Love, 

Mommy

kindergarten

Dear Little Leah, 

And just like that, you're off. All day. Five days a week. 

When did you grow up!?

Didn't you look like this just yesterday? 

No? Hmm...

What am I going to do without you!? Let's not think about that. Let's think about what YOU'RE going to do without me. Pretty much have a ball. I cannot wait to see what you learn each and every day Miss Leah. You are a smart and spunky little girl and school is lucky to have you.

I love you to the moon and back. Every single Kindergarten part of you. 

Love, 

mommy

the seizures are ceasing?

Dear Little Leah, 

The other day, I posted about you and your seizures on our family blog. I hope you don't mind. I did it because I try to post the truthful happenings of our lives and also because I've had a lot of people ask specifics about your seizures - what they look like, how long they last, etc. When we were at the doctor for Kate's checkup, I happened to have my camera out and you happened to start seizing, so I took some pictures. 

Oh Leah, these pictures are so hard for me to look at. They remind me how not in control of your situation I am. They remind me of how much harder you have to work to do so many things. And how downright unfair it is that you have Rett syndrome and can't even tell me what it feels like to have this happen to your little body. 

But, Leah, they also remind me of how amazing you are. The fact that something like this can happen to your body - and you don't have the ability to stop it or control it or communicate it in any way - is horrible. But you often come out of it smiling. You love when you can "kapow!" a seizure. 

Speaking of kapow!-ing seizures, your new medication has been working pretty well! You went three full days with no seizures, then you had one on Sunday morning. Then none yesterday and one this afternoon. Two in six days is so much better than our norm as of last Wednesday. Here's to hoping it continues to work and you can get back to your normal, happy, smiley, rambunctious, giggly self. 

You are the strongest and bravest girl I know. And I know a lot of girls. 

I just love you so much. Keep on kapow!-ing!!

Love, 

mom

You make Your Own Sunshine

Dear Little Leah, 

 (june 2012)

Every so often, a song comes a long that reminds me of you. A lot. A month or so ago, I was watching tv after you had gone to bed and a commercial for Lowe's (of all places!) came on and I just fell in love with the lyrics to the song being sung in the background. 

Of course the commercial only plays a tiny portion of the song, so I looked it up online and I just love the whole thing! It is YOU to a T. It's called "I Make My Own Sunshine" by Alyssa Bonagura. Here are the lyrics:

Everything is wonderful, everything is great.
Free as a bird singing outside my window pane.
Got a fresh new start; It’s a brand new day.
And I got lots of love to give away.
It don't matter if it’s rainin', nothing can phase me.
I make my own sunshine.
And If you think you can break me, baby you're crazy.
I make my own sunshine.

Hey! Let’s make a rainbow. Look for the pot 'o gold.
I’ll show you how to keep it nice and easy.
Even if a cloud starts forming on my lovely day,
there’s nothing, NO nothing that could stand in my way.
It don't matter if it’s rainin’, nothing can phase me.
I make my own sunshine.
If you think you can break me, baby you're crazy.
I make my own sunshine.

Seriously. Is this not you!? No matter what is thrown your way, you just deal. And you usually deal with a smile on your face (especially when those seizure medications aren't messing you up). And, because you smile, it makes me and lots of other people smile too. You absolutely make your own sunshine. And nothing can stop you. And you help me to make my own sunshine. In fact, you are a big part of my sunshine every day, Miss Leah. 

I just love you. 

A lot. 

Love, 

mom

last day of preschool

Dear Little Leah, 

Well, you did it. After three different schools, five teachers and three years, you are done with preschool. Well, except for a few weeks of summer term in July. But hip hip hooray for you! You, my friend, are off to Kindergarten. It's hard to believe just how much you've grown in the past three years. {I promise I didn't do your hair the same way on purpose.}

Your last day of Beginnings Preschool was full of celebration. You and your classmates performed all sorts of impressive songs and dances and then we all got to go outside and eat ice cream. 

Your last day of Foundations Preschool was a little less celebratory, but we did get to come and sing with you at the school wide morning sing 

and treat your teachers and therapists with a small and very inadequate thank you for all they have done. You, grandma and I had fun baking the cookies the night before. Grandma even let you lick the beaters.

And then you rode the bus home. We couldn't help ourselves. It's just too cute.

You have worked hard, Miss Ribbons, and my has it paid off. 

I love you bunches. 

Love, 

mom

Preschool 2011-2012

Teacher: Ms. Martin

Para: Ms. Lexi

OT: Mrs. Wendy

SLP: Ms. Susan

PT: Ms. Kris

natural history study boston

Dear Little Leah, 

Explain to me how you can even look darling while wearing an EEG cap? It doesn't seem like it should be possible. And yet it is. 

Daddy said you guys had a great time on your date in Boston. You even got to go to Quincy Market after and grab a bowl of chowdah with dad. And you got to go to Target. And you got to pick up Grandma Hauley from the airport on your way home. I think it's safe to say it was a great day. 

You are one brave girl, Miss Leah. And I love your guts. 

Love, 

Mom

cape cod strollathon or bust

Dear Little Leah, 

Strollathon #2 was a smashing success - in the rain. But let's be honest, the way you rock your rain boots, who's to complain about a few little raindrops!? 

This time we traveled a few hours southeast to attend the 7th Annual Cape Cod Strollathon. You decided after conquering the west coast, you'd shoot for the east this time. You swam in the hotel pool, got a queen size bed all to yourself, miraculously slept through Kate's hours of screaming and rode in the car like a professional passenger. Our friends the Holbrooks came along to support us and we all had a great time.

We made some new friends and you, dad and Damon strolled some new streets all in the name of Rett syndrome research. And after a successful event, we are now $100,000 closer to treatments and a cure!!

I have to admit - I love wearing my Team Leah Bean shirt. It makes me proud. YOU make me proud. And I love you to the moon and back. 

Love, 

mommy

field day

Dear Little Leah, 

Thanks for letting us tag along and come to your end-of-year field day. I loved every second of watching you participate in each activity. 

 Although it was even more fun when they put you in the wagon so you would stop screaming. 

 

I wanted to eat you right up when I saw you with that yellow bandana on your head. 

They even wrangled daddy into helping with the soccer ball station. He got a kick {no pun intended} out of it. 

I love seeing you at school and how you interact with all of your friends. You've made some good ones this year. That is for sure. 

And you know what else is for sure? I love you. Yup. I do. To the moon and back. 

Love, 

Mom

big sister

Dear Little Leah, 

Well, the day finally came. Just like we said it would. You became a big sister! Your sister Kate Jensen was born Sunday, May 13th at 10:07 pm. 

You came to visit her the very next day and, after your first visit, I don't think you were as impressed as we hoped you might be. 

But don't worry. Since then, you've warmed right up to her. You give her just as many sweet kisses and loves as you do whacks and thumps. That's probably a better record than most older siblings, right? 

I have to admit, you've taken to these changes in your life with flying colors. Other than one or two emotional breakdowns, you've been downright amazing. You often come up and snuggle right next to me while Kate is eating and I LOVE it! You are the best cuddler.

I know it's a big change. And it's going to be hard to get used to having her around. But Leah, you are going to be the best big sister. I just know it. Thanks for being patient while we all figure this out. Just one more reason you're amazing. 

I love you to the moon and back, little Leah. I always will. 

Love, 

Mom