Friday, December 28, 2012

giggles from fellow five year olds

Dear Little Leah, 

The following story was told to me by your primary teacher this year, Sister Pyfer. She and her husband both teach you and are great friends of ours:
"We had the sweetest experience in class when we were talking about the resurrection of our bodies. We were explaining how people that are disabled or can't talk or walk, etc. would be healed and be able to do all those things. Both Amelia and Sarah's eyes lit up and they started smiling. And they said, "So you mean Leah will be able to talk to us??? And she will be able to play with us??" And we said, "Yes she will!!" They got so excited and giggly and said they couldn't wait for that day to happen!! Seriously I was crying and Bryan was tearing up. It was one of the sweetest moments I have ever had. We love little Leah."
Oh Leah, I can't wait for that day to come either. I think I might giggle just like Sarah and Amelia. I'm sure you're more excited than us all! Thanks for often being such a great reminder of keeping an eternal perspective. Days can be long and hard for both of us, but I'm happy that you are mine forever. 

Love, 
Mommy

Monday, December 24, 2012

Dear Santa, vol. 6


Dear Santa, 
What. A. Year. 

It’s my sixth, as you well know, and it definitely had its ups and downs. 

The Ups:

I have continued to improve my physical strength and stamina. My teachers and therapists are extremely pleased with my progress. I make sure to get in a certain number of steps each day and I regularly practice the stairs. 

I’m really getting good at helping to feed myself at home and at school. We started with just a cheese or apple stick. My helper would put my hand on the food and then their hand over mine, guiding my hand to my mouth while stabilizing my elbow. Well a year later, I need no stabilization, just a bit of guidance and pretty much no help with the grip. I can even use a spoon and a fork. 

I know. I’m basically amazing. 

I became a big sister this year. That takes a lot of adjusting and I took it all in stride. I really like Kate, but she can be pretty inconvenient at times (read: bedtime). She’s loud and messy and she cries a lot. But, I remember what it was like to be a baby and I still remember what it’s like to have a need and not be able to communicate it. So…mostly I try to be understanding and just give her lots of kisses.

I also started kindergarten this year. I’m doing well with my switch as well as using my eyes to communicate. It’s a hard road. Sometimes my body just won’t work at all. And sometimes when it does work, others aren’t watching. But I just keep trying. I also use electric scissors and am hoping to get a computer next month. Mommy keeps saying something about insurance holding things up…

I’m still very compliant when it comes to dressing warm for the winter. It’s already hard to move my little body, let alone moving it when it’s smooshed inside of snow pants, a coat, mittens, a hat and boots. But I do it. And I usually have a smile on my face.

I was kind of horrible earlier in the year when it came to working on my potty chart. So, mommy ripped it off the wall and we don’t have a chart anymore. I realized she was super serious about the issue after her tantrum, so I’ve tried my best and I go multiple times a day in the potty!!

I am a great sleeper. Period. (Mom says this deserves triple points.)

The Downs:

Mostly, there has just been one down this year and that is having seizures. And those aren’t even my fault! They just won’t stop, Santa. They make me so tired and the medications make me crazy. We’re on a first name basis with the school nurse and the neighborhood pharmacist. Mom, Dad and the neurologist are trying their very best to find what works well for me and they think they’re onto something. Is your desk wood? If so, knock on it because I’ve only had 4 seizures during 2 days of the last 2 weeks! That’s a really good thing.

Well, Santa, as you can see, I’ve been overwhelmingly good this year. It’s kind of a no-brainer. As for gifts, I’d just like for you to cure Rett syndrome. Buuuuut, if that’s not possible this year just keep working on it and bring a doll for the tub and some blocks for me to play with my dad instead. 

Tell Rudolph hi!

Love,
Leah Layton, Age 5

p.s. I’m still in New Hampshire this year, but I’ll have a new house next year. Do you have an email where I can forward you my new address when we know it?

p.p.s. You're looking mighty young this year. Dad wants to know your secret!

Monday, October 1, 2012

be aware. be veeerrry aware.

Dear Little Leah, 

It's October. The month of goblins and gosts. Tricks and treats. Oh yah, and Rett syndrome awareness. 

This year, we decided to get our toes in on the action. Even Katers joined in on the fun. It was her first pedicure ever, by the way. And she did it just for you. 

We sure love you, miss Leah. Every single purple toe of you. 

Love, 
Mommy

p.s. Be very grateful that you got your dad's toes and ankles. It would have been a very scary thing to inherit mine.

Sunday, September 30, 2012

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

Thursday, September 13, 2012

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

Friday, September 7, 2012

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

Tuesday, July 24, 2012

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

Friday, June 8, 2012

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

Tuesday, June 5, 2012

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

Sunday, June 3, 2012

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

Wednesday, May 30, 2012

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

Wednesday, May 16, 2012

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

Thursday, May 10, 2012

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

Sunday, April 22, 2012

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

Thursday, April 5, 2012

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