Frozen and some fabulous friends

Leah went to a fabulous Frozen birthday party today. I'll be honest: sometimes I actually dread the fact that Leah gets invited to birthday parties. I know. Horrible. But it is often such a glaring reminder of all that she can't be. All that she could be if it weren't for Rett. It's extra work for me and I'm pretty sure she doesn't want me hanging at her side at every party and get-together she goes to. It's hard to watch the other parents drive up, drop their kids off and drive away with a few hours to themselves. But, such is life. 

Today, though, was a different story. Leah has such an incredible group of friends. They include her. They help her. They adapt to her needs. They play with her. They talk with her, not at her. Watching these seven year olds adapt to her needs and joyfully include her in every game and craft makes this mom's heart swell. 

Don't mind me. I'll just let these girls take over, step back and snap a picture to remember this moment forever. 

Thinking warm thoughts

Today it was cold. 

Really, really cold. 

So cold school was cancelled for fear of children getting frostbite for being outside for less than five minutes. 

So, naturally, we donned our swimsuits, filled the tub and thought warm thoughts. 

There's a chance I also said a prayer that I will survive this winter. 

P.S. Don't you love Leah's new haircut!? Three cheers for tangle-free mornings!

not speaking

I find myself at a loss of words when it comes to this post, which I guess is appropriate considering the topic for which I have no words is the Not Speaking campaign for Rett syndrome organized by Rettland Foundation. 

This October, many joined together and took a pledge to NOT speak for one hour in an effort to raise awareness for Rett syndrome. Other forms of communication were allowed, but no speaking. Stickers were provided for each participant to wear as well as cards to pass out with information about Rett syndrome. 

We had some family and friends sign up and support us, which we are so grateful for, but I was really touched when Leah's 1st grade class decided they would collectively not speak for an hour. 

Yes, 17 six and seven year olds NOT SPEAKING for an hour. Their lovely teacher had them begin during the last 30 minutes of instruction and then continue for the next 30 minutes as they traveled home. 

After the experience, she wrote an email describing some of their thoughts and feelings and her words are much better than mine. 

"I'll start off by saying my expectations were low when deciding to ask 17 six year olds to be silent for ANY amount of time. Let alone an hour. I just have a VERY chatty group this year, so I knew it wasn't going to be easy... Or so I thought.

They not only surpassed my expectations, but they shocked me! They really did 'not speak' for the full 30 minutes!! If only I could use this campaign every day! I'm not sure how they did once they left my classroom to head home, but they each worked so hard before dismissal. There were a couple of slip-ups and then others would take it so seriously and remind them to be quiet. I even heard a girl whisper "For Leah!" which completely melted my heart. It was amazing and touching and so cool to witness.

The next day we discussed the experience while sitting in a circle. Leah joined us so the kids could ask her questions as well.(Leah was also in the room for the "not talking") Many students said "it was hard" for various reasons, most being that they couldn't communicate what they wanted. One student, told the class the hardest part was when a friend couldn't read the card and his friend started thinking he was mad and didn't want to be his friend anymore. He used the word frustrating to describe how he felt, and he admitted he finally cracked and talked "just a little" to tell his friend the real reason he wasn't speaking. You could tell he was truly conflicted over it. It led to a great discussion about how frustrating it must be for Leah ALL the time, and when we asked her - she gave a very big YES! it is frustrating sometimes.

Some students shared things they did to help them communicate... Writing notes, using our mini whiteboards at school, or even hand motions. On student raised her hand and asked "But what does Leah do, since she can't really do those things?" Again, was a great point that we were able to discuss. Leah told us "yes" she can use her hands sometimes (with a switch or cards) but that it was hard.

When I asked what they learned, a student explained they learned more about what is was like to be Leah or any girl with Rett syndrome. We talked about how that was the point of this experience and hopefully others learned a little, too, when we "talked" to them.

We finished the discussion with a picture and I believe Leah LOVED every minute of the attention and celebration."

After their discussion, the kids in her classroom wrote about their experience. Here are some excerpts of what they said:

"It was hard I couldn't speak to my friend and my friend couldn't speak to me. It is not easy to be Leah."

"I learned it is hard. I had to write on a piece of paper."

"I couldn't tell my mom how my day was."

"At my house my friend came over and it was hard to ask which game he wanted to play. I used my fingers to tell my mom to help. It was pretty hard. I loved it."

"I had trouble on the bus because other kids tried to talk to me."

"I feel bad for Leah, but she is used to it. I am not."

"I think that it's hard for people that have Rett syndrome to do what they want to do."

"It taught me that kids that have Rett syndrome can not communicate how we can."

"It was hard! The frustrating part was when I had to ask to go to the bathroom, but I couldn't!"

"If you wanted to tell someone to stop, you couldn't and that was hard."

"It was hard, but also exciting because we got to know how it is to be Leah."

"Leah talks with cards. I learned that people talk in different ways."

To be honest, I find so many of these revelations so eye opening. But there are a few I really love. 

"It is not easy to be Leah."

That student is so right. It isn't easy to be her. And yet, more often than not, she makes it look easy-ish because of her attitude. I need to be continually reminded of how NOT easy it is to be Leah. 

"I feel bad for Leah, but she is used to it. I am not."

There is so much truth in this statement. She is used to it and there is something to be said about this life becoming Leah's and our family's norm. We have worked hard to adapt over the past six years and some things have become easier. Thank goodness for that.

"It was hard, but also exciting because we got to know how it is to be Leah."

It makes me so happy to know that other kids are excited to get a better glimpse into Leah's life and the things she struggles with on a daily basis. They are excited! They want to get to know her and wonderful opportunities like this make that possible. 

In the end, the gratitude I feel for those - old and young - who participated in the Not Speaking campaign leaves me a little, well, speechless. 

First grade sock hop

To celebrate the 50th day of school, the first grade classes at Leah's elementary held a 1950s sock hop. They all dressed the part from leather jackets and greased hair to poodle skirts and pony tails. 

I had an old skirt in my Halloween box that my mom made for me when I was a little girl. I talked it up and told Leah how great it was...and when we got it out of the box, we realized that it might have been great if Leah had been to years old. 

So, we headed to the fabric store, bought a yard of felt and got to work making a new one just for her. Purple, obviously.

And because we couldn't let the vintage skirt go to waste, we let Kate join in on the picture-taking fun. 

The actual sock hop was lots of fun. The kids played games having to do with the number 50, they limboed their limber bodies to the floor, and danced their little hearts out to the jitterbug, hand jive and more. 

I asked Leah if she wanted me to dress up to as I was volunteering. She gave me a very clear NO, so I didn't. But I think I'm not going to give Kate that option. Embarrassed or not, this mom is wearing a poodle skirt. 

First rate first grade pics

I love school pictures. I always have. I don't know why. There is nothing overly attractive about an awkwardly strained neck and a harsh background that rarely matches the subject. But I love them. 

And I love them even more when that first grade subject is beaming with happiness...on the first take. It just radiates from her insides!

It doesn't hurt when I get a package full of 30 of those beaming faces. Well done, first grade. Well done. 

Star Student

Each week, a student in Leah's class is designated as the "Star Student" and everyone gets to learn about him/her throughout the week. This week was Leah's turn. We made her a poster all about her favorite things, how she spends her time and just some Leah facts (has your 7 year old been to more than half of the 50 states?!). My favorite was that we created the poster saying she had lost 6 teeth...and she lost one 10 minutes before the bus came as we were brushing her teeth Monday morning, so we had to quickly change the poster. She thought it was hilarious! 

The star student also gets to bring home a special book bag full of Little Critter books...and Litter Critter himself. We were able to take pictures of Little Critter helping Leah do all the things she does in a normal week: reading at bedtime, eating, sleeping, swinging, dancing and climbing on the ginormous tree the landlords cut down in our backyard. Doesn't everyone use a giant, dead tree as a play structure? 

Her class had a Q&A and asked her lots of questions, which she was more than happy to answer. It was a great week for Leah, who definitely doesn't shy away from being the center of attention. Love that girl. 

first of first

The much-anticipated first day of first grade has been two years coming. Every time I think, I'm not old enough to have a 1st grader I remember that, actually, I'm old enough to have a 2nd grader, and then I immediately feel better. 

We had a successful meet and greet night where we walked through Leah's classroom, saw (and sat in) her new chair and desk, dropped off all her school supplies and met her new teacher, Mrs. Radosevich (yes, I spelled it wrong on the sign). She has one of the same aides as last year and one new one. AND two of her best buddies from Kindergarten are in her class this year, one being a locker buddy. 

It was also nice being able to send her back to the same school, with no huge changes - the first time that has ever happened in her 5+ years of school. I almost didn't know what to do with my free time. 

Leah was up and ready to go on the first day way before the bus arrived. She knew exactly what she wanted to wear (still loves those horses!) and she was incredibly efficient all morning. We played outside for a good 20 minutes just waiting, waiting, waiting. We had ample time to get pictures (and Kate was not about to be left out). And the grin on Leah's face could not be wiped off. 

I send her off each day just hoping we are doing the right thing. Hoping that everyone at school believes in her as much as we do at home. And they do. They believe in Leah because Leah makes them believe. The light in her eyes and her grinning, gregarious personality almost force others to believe. She's in there. And she is going to do some amazing things this year. 

First grade is off to a first-rate start. 

kindergarten (and its art) in the books

Well, it finally came. The much-anticipated final day of kindergarten EVER for this girl. We started quite the journey in August 2012 and then made a difficult decision last year to continue Leah's kindergarten journey for an additional year. I'm happy to say, at the end of that second year, it was the best decision for all involved. 

Leah has come such a long way and now I can say without hesitation that she is ready for 1st grade. 

We've been blessed with amazing teams in New Hampshire and Iowa. Sometimes when I think about how many people are on our side, pushing Leah to succeed and believing in her efforts and potential, I almost can't breathe. I often read about the fights that friends have to have to get extra services for their children and it makes me so sad because that hasn't been our path at all. 

We sent her off with an inadequate gift for each of the members of her personal team + our fabulous bus driver. And we also sent her off in her pajamas as they were having pajama day. I felt a tiny bit guilty as school doesn't officially end until next Tuesday (because of additional snow/cold days that were added on, blech), but we leave this weekend for Utah. 

As I was sifting through the drawer full of artwork that came home in her backpack this year, my eyes filled with tears. I am embarrassed to admit it, but there was a time not so long ago that I hated the artwork she brought home. I'd open up her backpack and sort through the piles of construction and printer paper each day and think, "None of this is yours. This is the work of someone else. I wish, just once, I could see an original work of art from LEAH."

I never said my thoughts out loud and I truly hope Leah never picked up on those feelings. Because eventually I grew some brains. 

I slowly started to realize that yes, these pieces of art were partially the work of an adult. Obviously. But how grateful am I for those adults! How grateful am I that she has someone to walk by her side each day. To ask her what color she'd like to use, what shape she'd like to add, what number comes next. To look into her beautiful blues and try to put on paper the thoughts that are in her head. 

We don't keep all the art at our house. For that to be possible, we'd have to build an addition onto our house. But, we keep our favorites and take pictures of every piece. And oh how grateful I am for each and every piece. 

Flashbacks to Leah's first days of Kindergarten take 1 and Kindergarten take 2. 

Flag Ceremony

Leah's school had the best assembly today - a flag ceremony in honor of Memorial Day. 

All the kids wore red, white and blue and they sang a good handful of patriotic songs. 

The local Kiwanis club presented the school with a new flag for the coming year. 

There was an essay contest in the 5th grade about "What the Flag Means to Me" and the winner read her entry (I would have been all over that when I was in 5th grade). 

We all got to say the Pledge of Allegiance (how long has it been?!). 

And they had veterans past and present who have associations with the school or students there attend and be honored (with a military base in a neighboring city, there are a lot!). 

It really was a fantastic morning. It made me so grateful to live in this country and enjoy the freedoms I do and it made me happy all over again to see Leah interacting with others and thriving at school. Can't wait for next year. 

meanwhile, back in Iowa

Though we were a little disappointed to not be bringing Kate and Leah back to Boston with us this year, we were so excited to have a new group of supporters! Leah went to school with her new 2014 Team Leah Bean shirt (and her medal from last year). We gave an iron on to her classmates and so many of her teachers, therapists, aides and classmates also wore them! 

I just have to smile every time I think about all the positive support Leah has found at this school. From kindergarten students to the principal - and everyone inbetween - they have just been incredible. Even her bus driver wore a shirt!

Leah's teacher and one of her therapists sent me these pictures with a note that said, "Sending you our best wishes. Go Team Leah Bean!" 

I think Leah liked the attention she got on Marathon Monday.

Even one of her para's sisters wore a shirt and sent a picture from Ohio!

spring pictures

When I was little, I used to BEG my mom to purchase the spring school pictures. You know, the ones withe the props and the neon and the fake floral backgrounds. Those school pictures. She always always said no (except one year...but there's no way I'm posting those pictures here). 

And now I totally understand. 

I mean, the girl is cute, but come on...

Sorry mom. 

valentine's day

Valentine's Day this year was simple and perfect. Leah didn't have school, but I attended her class party the day before. She was glowing. And she was actually able to participate in the class game - they sucked up marshmallows with a straw and dumped them into a cup. She was really good at using the straw! 

The following day, we colored our valentines, got some of them delivered and took some glorious naps. All while wearing hearts, of course. 

It was a simple holiday this year. 

And, quite simply, I loved it.