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

toothless

dear little leah, 

um, i'm sure you're aware, but you grind your teeth. a lot. 

i'm sure it's more annoying and painful to you than it is to anyone else {and that's saying something because it's extremely annoying and painful to me and your dad...} but the grinding got so bad that you actually perforated your left front tooth, causing it to abscess. 

this had to hurt! and it had to be taken care of. 

so, off to the dentist you went, to get checked out and x-rayed {may 3rd}. eventually, it was decided that both front teeth would be pulled as the right front tooth was on the same path and would need to be pulled in a month or two anyway. 

when extraction day came {may 9th} you were oh so brave in the dental chair. dr. bachner was great and you loved kenny the kangaroo, who showed you everything that was being going to be done on you on his own teeth first. that was nice of him. 

daddy was also brave. he held you tight and kept you safe the entire time. 

i was not so brave. i'm blaming it on billy, but i had to turn away and let the tears stream down my face. the long needle with the novocaine has never bothered me - but then again i've never had to see it pierce my child before.

  

other than a few tears, we all came out unscathed. and you got some extra ice cream out of it, so i think it turned out okay. 

oh yah, and the tooth fairy came. that was pretty fun too.

thanks for being so brave, miss monkey. you really are the best. 

love, 

mommy

one of those days...

Dear Little Leah, 

I did it again. I went and had one of those days. I'm tired. I'm emotional. And I'm just not perfect. 

I've worried a lot about you lately. A lot a lot. Your seizures. Your hitting. Your instability. And I fear I just don't know how to be your mom. I'm trying my best, I really am. 

I want what's best for you. But I'm afraid sometimes I don't even know what is best. 

And when I think I've figured out what is best, I don't know how to accomplish it. 

I truly believe you have untapped potential. But I don't know your limits or how hard I should push you to reach that potential. 

I know there are things I could be doing that I'm not. 

I know there are things I should be doing that I'm not. 

I know there are things I'm doing that I probably shouldn't be doing. 

And so I continue to worry. I worry about how life is going to change in the next few weeks and how it might affect you. I worry about how it might affect me and my ability to care for you. I worry about our girl's only summer and if I'll even be able to survive. But if I do, I worry that I won't have the energy to give you all you need with a new little one in our house. I don't want you or your needs to fall to the wayside, and I'm just not sure how to balance it all (after all, I only have two arms and you usually take up both of them). 

And so, put all those thoughts into a bowl, mix them up with my tears, fears and other emotions and you kind of have a wreck of a mom tonight. Sorry about that. It's just one of those days. 

I love you. Really, I do. Even though I made you eat all of your dinner and you didn't want to. 

Love, 

Mommy

little robin red breast

Dear Little Leah, 

This week in school you've been learning all about birds - specifically robins. We are under strict orders to keep an eye out for them so you can report back to your teacher every day and mark your chart each time you spot one. Up to today, you've seen 14. And today we saw 12 more!

You've colored robins, cut them out of construction paper and read about them. You've learned about their blue eggs and the home they call a nest. In fact, you even got to make your very own nest - with twigs and leaves and mud. I'm told you thoroughly enjoyed the mud part. I can only imagine. 

The other day as we were walking to the car, just before you stepped off the curb, you paused. Actually, you completely halted. At first I thought it was just your usual Rett syndrome pause where nothing in your body seems to work and you simply cannot move. But this was different. You weren't tight at all. You nearly bent your body in half just to stare down at the ground below. When I finally took the time to see that you were looking at something, I decided to take a look too. 

This is what was apparently so intriguing:

I wondered why in the world you might be so interested in a pile of leaves and dirt clustered in the corner after a long, cold winter. 

And then I remembered the robins. And their nests. And realized that maybe it looked like a nest to you. It did look ridiculously similar to the creation you brought home - it just needed a little blue egg. 

So I asked you, and again, your eyes spoke a thousand words. You thought there was a robin's nest on the pavement and you didn't want to step on it! So, we moved over a bit and stepped around it. 

Oh, Leah, what a fun gift for me! I got a glimpse of your five year old thoughts and it was amazing! And it also reconfirmed to me the fact that you are learning and growing and stretching that brain of yours in incredible ways. 

There is a lot to learn, Miss Leah. For you and for me. And I'm so glad you have such a hunger for knowledge. And are teaching me to continue to hunger for it, no matter how much I think I know. Learning and growing is the best kind of freedom, Leah. I know your body probably seems like a prison most days, but with knowledge you can truly fly, just like the robins. 

I love you, Little Leah. 

Love, 

Mommy

leahceratops

Dear Little Leah, 

For the past few weeks, you have been learning all about dinosaurs in your preschool class. You've come home with some fun facts and some amazing works of art. But your diorama tops them all. I was told you spent a long time painting the sky and earth, constructing the volcano, trimming the trees, adding the flora and building a model of the one and only Leahceratops. 

The dioramas you and your classmates created are all on display in the glass case at the elementary school - and believe me, that's a coveted case. All the students, parents, teachers and staff who walk in the main hall will get to see your masterpiece. 

I love that you decided the Leahceratops was a peaceful dinosaur. I can't imagine anything modeled after you being anything to the contrary. 

And as for the three horns, Grandma Hauley had a great idea: we'll be adding three beautiful ribbons the moment the diorama is sent home. I think its nickname will have to be Missribbonsceratops, obviously. 

I love you Miss Ribbons. And I love to see the results of your hard work each day. May your peacefulness and work ethic never go extinct. 

I love you. 

Love, 

Mommy