more high horses

Because I know you just can't get enough of the pictures of Miss Ribbons on her horse, here are some more. Dad's class schedule changed with two lessons to go in the semester so he was able to tag along. Though it's still nearly impossible to get a great picture in the dark barn, he did a lot better than me. 

And, more importantly, he was able to see all of Leah's tricks on Buddy. Over the poles, around the cones, trotting, and riding forward, backward and sideways {not to mention on her knees, of which we have no pictures}:

He was able to see Leah say "walk on" with her switch and ring the bell to signal "whoaaaaa" and stop:

He was able to witness the constant running of the nose {wait, he already knew about that...}:

And the ever present cheek-to-cheek grin {he's seen that one before too, but it never gets old...}.

And he was able to meet Kate, her therapist, and see Blythe {his classmate} in action as the volunteer walker. Blythe is simply amazing with Leah and our family is so blessed to have her in our lives. We will definitely miss her as we move on. She loves Leah and it shows. 

High Horses is definitely a highlight of our week!

sunshine and shadows

2013 has proven to be a trying yet tremendously rewarding year thus far. We're just one month in but I've already had my share of ups and downs. As the new year began, seizures were in full swing. We had tried for more than a year to get them under control and nothing was working. 

One night in early January, I lay quietly in my bed, the glow from the streetlights casting shadows on my closet door. The steady blinking of the smoke alarm visible out of the corner of my eye. Tears slowly but steadily streamed down my cheek. Some days felt seamless while others were a constant struggle from beginning to end. I was at my wits end with medications as I felt like I was pumping my daughter's body full of poisons for naught. 

And then, after a few hours of sleeplessness and sadness, a rush of comfort overwhelmed me. The tears continued, but the peace and comfort I felt was indescribable. "Every day is a gift," I thought. "Every day is a blessing."

In the past month, we have begun to control Leah's seizures. Other trials have presented themselves, but we're working through those as well. 

As I was thinking about all of this again today and how much has changed in a month, I looked at two pictures taken in the past week or so. The first of Leah, bursting with joy, sunshine streaming through the car windows. Sunshine so bright she had to wear her sunglasses. And, looking at this photo, I feel that joy. So much joy my heart could burst. 

The second picture is of Kate. A very sick and sad Kate last week. But in a moment of respite, she found her shadow for the first time ever and was completely entranced. She spent a good ten minutes following the cherubic figure on the wall. The crazy hair, the chubby fingers, the pacifier, the mile long eyelashes. I just sat back and watched. And I again felt that joy.

As I watched, I thought, there's sunshine here too. Even in the shadows, sunshine has to exist, and even the shadows can be beautiful. The tears will still come and the days might still be hard, but the sunshine and joy are there. We just have to look a little harder for the beauty through the darkness. 

nemo

Storm nemo came and went. We were "prepared" in that we had food and water and a few other provisions. The snow was expected to be light and fluffy, so damage to power lines in our area wasn't really a threat. Ryan was hoping for three feet to dump. We got maybe one. (My snow boots go almost to my knees.)

Leah and Ryan played in the snow on Friday (school cancelled!) until the the wind chapped their skin too much. 

Kate was only relatively enthused and she preferred to view the beauty from the warmth of her bedroom window. 

Larry was probably least enthused of everyone, but as always, he has been a good sport.

Blessed once again to be out of harm's way and simply enjoying the beauty of winter while getting a serious workout shoveling snow.

Good thing John Deere sells snow blowers...

eye gaze trial

It happened. It finally happened. After nine months of evaluations and reports and paperwork and insurance and emails and phone calls and more, Miss Ribbons is officially in the trial phase for an eye gaze computer. And it's kind of amazing.

She is currently trialing a Tobii device. The computer and mount are at school during the week where she works with various therapists and it comes home with her on the weekends and one week day. Today we used the device to do whatever Leah wanted to do. She played the xylophone for a little while, then she watched some funny videos. We used it to pick what color she wanted to be when we played trouble and then she rolled the dice with her eyes. She spent a good amount of time on the jokes page (What gets wetter as it dries?)*.

And then, in true (almost) six year old fashion, she told me "Catch you later, alligator". It was time to be done. 

That Leah. She's a smarty. 

*A towel. Ba dum ching!

13.1 the first

Ryan hates running. 

But he hates Rett syndrome more. 

And so, for the last few months, he has patiently trained...with a bum knee...on an elliptical and a treadmill in the Tuck gym. 

And today, he ran a half marathon. 

On a treadmill (thanks to Storm Nemo).

We were all pretty proud of him and all the hard work he has put forth to get to this point, so we figured we should make it official. 

I'll restate:

Today, Ryan ran the First Ever (and only) Leah Layton Tuck Gym Half Marathon Race. 

And he won first place. 

Take that, Rett syndrome.

a beautiful mess

Kids are kind of messy. That's just a fact. But I've come to really appreciate a good mess created by two beautiful working hands. 

For the last few years my friends thought I was crazy when I ushered them out the door before they had a chance to clean up after their own kids who had just made a mess in my front room. A mess of all the toys that Leah couldn't make a mess of herself. It was therapeutic for me to put those toys away. 

I no longer take for granted tiny board books strewn about the front room. I love picking up blocks and buckets and bottles. Tucking baby dolls and stuffed elephants and rattles into the toy bin nestled next to the couch each night. 

I love that my plastic dish drawer is getting good use again. 

I really, truly love that beautiful mess. And I hope I always will.

Superbowl Sushi Sunday take two

The second annual Superbowl Sushi Sunday was a hit. Our Niners almost pulled off a win. Some commercials gave us a laugh. The company was fantastic. And, as far as the sushi goes, the prep and production were much more streamlined and even more delicious than last year, if one can even imagine. Even Leah was a fan.

I'm officially declaring it a tradition. 

winter running update

Well, 12 and 14 milers are complete. 

I'm happy to say that these legs are getting stronger. I ran 12 miles about 12 minutes faster than I ran it last fall - and the streets were much icier this go 'round. That, my friends, is a very frozen Connecticut River. VT on the left, NH on the right.

Today's 14 miler was a success thanks to Miss Michelle who up and ran the first half of it by my side. It was cold, cold, cold, but we donned our balaclavas and showed 9 degrees exactly what we are made of.

Nine weeks down. Ten to go.

we did it

We did it. We raised $10,000 to benefit the Rett Syndrome Association of Massachusetts and bless the lives of Leah and so many other girls and boys with Rett syndrome by running the Boston Marathon. We are beyond humbled and grateful for the outpouring of support from friends, family members, classmates, neighbors and even complete strangers. 

We are very aware that $10,000 is a lot of money. We could not have done this without you and trust that each and every penny will be used carefully and wisely.

We have been brought to tears on multiple occasions by your sacrifices, your kind words and your belief in our little Leah. And we are sure to be buoyed up by that support not only on Marathon Monday but every day leading up to and after the race as well.

Thank you. Thank you. Thank you. 

january in an instant

January was a lot of things. But mostly it was cold. Really, really cold.