Monday, September 30, 2013

september in an instant

September, September....

...was a lot less humid (can I get a woot woot!?) so we ran a little faster. 

...was a lot less hot (another woot woot!!) so we wore a few more cardigans.

...was windier, so we purchased our first rake and push broom. 

...was bi-polar, so we cheered on the cougs for wins and losses. 

...screamed autumn, so we baked fall treats. 

...saw us a little further down the road to settling in. Some days I feel like I've been driving down these roads for years. And then there are those other days, days when I get lost and wonder how in the world I ended up where I did. 

I spoke in church, Leah rocked her IEP (and hopefully her school pictures), Kate made us giggle daily with her antics, Ryan was greeted at the top of the stairs with squeals every evening at 5:30pm (I'm still getting used to that part...) and we all went camping.

September, September. We're getting there. 

Saturday, September 28, 2013

a camping we did go...

We took advantage of the only open weekend we had before the weather could possibly turn for the worse and went camping with a few families we have come to know here in Iowa. The $9 entrance fee for the entire night didn't hurt either. 
We spent the night at Wildcat Den about 40 minutes away. Couldn't have asked for better weather, better eats or better company. 

I could have asked for a better toddler. She decided she was terrified of the tent and would NOT sleep. So, around 11:30, she and I took a walk to the car and slept there for the night. She was also not a fan of the hiking backpack. She was a fan of Leah's old camping chair and playing red light green light. I guess we'll keep her. 

Leah, per her usual, was a camping champion. And loved all of her adorable playmates. Especially that handsome M.

And now for the proof (the good ones are courtesy of the amazing Tara). 

And also, I'm throwing those pants away. Yikes!


Thursday, September 26, 2013

new batteries

Christmas came early this year for Kate. 

I finally got around to replacing the corroded batteries that were previously residing in Leah's old fridge magnet toys. The look on Kate's face when she realized songs emitted from their little plastic bodies when she pushed the buttons was priceless. For awhile, she would push both toys at the same time, then turn around to show me her shocked face, then push more buttons, then dance. Repeat, repeat, repeat. 

Many of my friends have conveyed their sincerest apologies for the noise that will now be emanating from my kitchen. You know, an alphabet song that never makes it past the letter D, or the songs about farm animals Kate has matched together. 

But honestly? No apology necessary. Those are sounds I have missed for the past four years and I am forever grateful for working fingers to make our toys sing again. 

Thank goodness for batteries. 

Wednesday, September 25, 2013


Most people will tell you that IEP stands for Individualized Education Plan. But I'm telling you they are wrong. In Leah's case, it stands for Incredible Educational People. Cheesy, I know, but it's honestly how I feel. 

I am over the moon with how Leah's IEP (refer to the first meaning...) went. For one hour (and one hour) only I sat in a room full of adults who had only met Leah a short two months prior and who were fighting FOR her (refer to the second meaning...). 

I have so many friends with horror stories of their child not getting the services they desperately need not just for a good education, but for their safety and health! I walked away from our meeting, Leah's hand in mine, so humbled by all that the individuals in that room are doing for her. 

They believe in her. 

They know she is in there. 

They want to see her do her best and reach her potential. 

And it brought me to tears. 

Her special education teacher looked at me for a moment and said, "Did I say something wrong?" To which I replied, "No. You said everything right." 

The entire meeting was full of people saying everything right. Her mainstream teacher, the principal, the counselor, the nurse, speech therapist, occupational therapist, physical therapist, special education therapist, dean of students and more. They were all saying everything right. (The zucchini cookies I brought probably didn't hurt.)

Goals tweaked from New Hampshire that reflect where Leah stands currently (which tells me they are truly analyzing her and trying to determine where she was, where she is and where she has the potential to go). Goals implemented to help her learn and grow in a way that she can succeed. Goals that will play to her social interacting skills (instead of pulling her out of class for her therapies like they were previously doing, they are now including other children in those therapies because they found Leah responds better that way!).

We are upping the ante this year and Leah is responding so well. She loves to learn and we can all tell! And we feel so blessed she has the opportunity to learn in such a positive, uplifting environment. 

An Individualized Education Plan with Incredible Educational People for sure. 

(Leah was over the moon about it too.)

Saturday, September 21, 2013


The littlest resident of our home seems to be smitten with the biggest. 

Anywhere he goes, she follows. Anything he does, she copies. You will find her standing at the top of the stairs whispering "da da, da da" when she hears the garage door open. You will find her pounding on the bathroom door when he is showering. You will find her wrestling with him in the front room, reading with him in her bedroom and standing on the tops of his feet, her hands in his, as they walk together tandem down the hallway.

And today, we found her staring out the window, again whispering "da da, da da" as he mowed the lawn. 

The entire time he was mowing.

From her bedroom window when he was in the front and the sliding door when he was in the back. 

I think smitten is an understatement. 

Friday, September 20, 2013

mornings with mom

Leah's school has a darling tradition called "Mornings With Mom." One morning, before school starts, all the kids and their moms (or guest of choice) gather in the cafeteria for donuts and juice. Being new to the shchool, I wasn't sure what to expect. And, knowing I have to tag along with Leah a lot more than other moms tag along with their kids, I was pretty up front with Leah and asked her if she wanted me to come at all. 

The stare in my face was a resounding yes (and I have to admit, I was a bit relieved). 

That morning, we arrived on time and the lunch room was already jam packed. We shuffled through line and found ourselves a recently vacated bench and sat down. Leah was a little agitated with so much going on around her. So we ate what we could and then got up to walk around. 

Soon after, I noticed lots of kids headed outside to play in the school yard before the bell rang. Their moms were busily chatting with other moms around the perimeter of the playground. Again, I wasn't sure if Leah wanted to go outside because none of the other kids had to play with their moms. But, when she ran to the door and banged on it, loudly, multiple times, I got the hint. So outside we went. 

I know a few people from our church and a few others on her team and that's about it. Leah, on the other hand, apparently knows the entire student body. We could not walk 10 feet without someone saying, 
"Hi Leah!" 
"Hey mom, look! It's Leah!" 
"Hey Leah, come play with us." 
"Leah come over here!" 

And I'm not exaggerating. It was non stop. Girls, boys, kids from every grade.

And Leah owned it. She was eating up all that attention. 

I often worry that Leah spends her days on the outside looking in...just watching the other kids play. 

And while I know there is a little of that simply due to her physical abilities, or lack thereof, it doesn't consume her day. That little girl exudes sunshine and happiness, and her differences, so far, don't seem to phase the other kids much. I was absolutely impressed with each and every one of them and how they interacted with and included her. 

This darling tradition of ended up being a fortifying Friday for this mom. 

Thursday, September 19, 2013

mobile independence

It's hard to describe the feeling that fills my chest when I open my email for the day and see a message like this:

The image might be a little hard to read - it was for me through the tears that were welling up in my eyes. So I'll type it out for you:

"Tobii EyeMobile puts individuals with physical and communication impairments at the forefront of consumer technology, allowing these individuals to navigate and control standard, off-the-shelf Windows 8 Pro tablets with the movement of only their eyes.

"Compact and lightweight to meet the demands of those on the go, the Tobii EyeMobile allows for completely hands-free access to Windows 8 apps, internet, movies, music, e-books, social media and games on a tablet device. It gives users with spinal cord injury, arthritis, muscular dystrophy, and Rett Syndrome the opportunity to live a richer, more connected and independent life.

"Learn how the Tobii EyeMobile can help you, a relative or a friend - Here’s how it works."
Yup. You read that correctly. It specifically listed Rett syndrome. 

Now I'm not saying we are going to run out and purchase this device. And I'm not saying that if we did, our problems would be solved. But, I am saying that the presence of a device like this on the market (at one third of the cost of regular eye gaze computers!) might have helped a certain little girl this morning who was in tears and inconsolable for 45 minutes and her mom had no idea why. 

It might help a certain little girl who wants to play a game or listen to music or read a book...BY HERSELF. Without her mom tagging along and doing everything for her. 

It might help a certain little girl who is bored to tears in the car while her sister jabbers on, reads books and plays with her toys. 

It might help a certain mom to know that even on the darkest of days, there are people out there searching for...and finding solutions to our daily struggles.

That's all I'm saying. And you can bet I'm saying it with a smile.

Thursday, September 12, 2013

soaking up the last bits of summer

It seems that Iowa is confused. When we moved here in June, the weather was in the 60s. Now it's September and we're approaching triple digits? 

Kate and I have decided to embrace the heat, purchase a blow up pool (that was on clearance so late in the season - woot!), and splash ourselves silly in the back yard. 

Sometimes we invite friends to splash with and they bring yummy watermelon. It's a win-win. 

Entertaining ourselves with the fancy children's dinnerware from IKEA, we stack, pour, dunk, sip, and plop until the sun goes down - or until it's time for Kate's nap, whichever comes first. 

I'd say it's a pretty pleasant way to enjoy the last bits of summer. 

 (Also, so far no problems with the actual wearing of the clothes. That suit is too cute on her squishy little body to remember the bad!)

Wednesday, September 11, 2013

in tune

I had the piano tuned today for the first time in...a very long time. 

I warned the gentleman before he began. Really, I did. And I don't think he believed me. After the first little bit, he told me the middle register "really wasn't that bad."

Just wait, I thought. Just wait.

And then, once he moved to the upper register, he believed me. This is just a sampling of what he said:

"It was pretty sour, wasn't it?"

"I'm going fast on this part because I've given up tuning for the moment. It's kind of like a drive - I'm just trying to get it on the green. We'll put later."

"I'll leave the cover off so you can vacuum it out after I leave."

(I did.)

Yup. That's what happens when your moves (plural) take you to extremely varying degrees of humidity without tuning in between. 

But now? Now it is lovely. I'm listening to Ryan play right now and it is most definitely lovely. 

I also had a great conversation with the tuner while he worked his magic. I learned all sorts of things about this little piano. Ryan's parents purchased it when he was about six - that I knew. But I learned it was one of the first pianos made in Thomaston, GA. Yamaha bought the Everett Piano Company there and began building pianos. Before that, the only place Yamahas were made in the U.S. was in South Haven, Michigan. All others were made in Japan, Indonesia, China and Taiwan. But our little piano has some southern charm.

I learned some fun tips about tuning and muting and humidity and expansion of the boards and more. I learned how to tighten my pedal and change the felt for muting if I need to. I learned how to take all the covers off with ease and marvel at the beauty that is a piano.

And marvel I did for a few hours after he left. 

Just after he finished, let left me with an effortlessly beautiful arrangement of "You Were Always On My Mind."

I think I'll tune this baby more often. It was definitely educationally, visually and audibly rewarding.

Monday, September 9, 2013

all caught up

So, 30 blog posts turned into 58. But either way, I'm all caught up. I really like the sound of that. Enjoy my whirlwind summer!

eye gaze trial update
City of Lebanon
piano lessons
Hartland Dam
Ibiza whites
Leah's new gloves (or here)
Portland, Maine
May in an instant

June in an instant
High Horses show (no. 54)
Covered Bridges half marathon
Family Pictures
Canoeing the Connecticut
Our Beloved Blythe
Tuck Investiture
Dartmouth Commencement
Baker Bell Tower  
Simon Pearce Glass Blowing
Hard working artist
Mount Lebanon School
Rhode Island
Tucket List
Dad's Day
Wasatch Back Ragnar
Kate walks!
IRSF conference
Giving Hope a Hand
Cure Rett 

July in an instant
Disney World
Great Escape 5: Las Vegas
Camping cabin style 
Utah in a nutshell
Drive to Iowa
Bix 7
John Deere equipment
Featured Angel

August in an instant  
A lawn
first day at Deere
DQ for dad
Tug Fest
First visitor
Kindergarten take two
Antique tractor show
Leah in color

20 years
KTG: 15 months (and then some)

hitting the pavement

I fear Kate has a false sense of her own abilities. I'm not sure who she got this from as neither Ryan nor I are extremely bold and courageous. The girl thinks she is invinceable. 

But the pavement thinks otherwise. 

These are her first two incidents this month. 

There has been another since. 

And I'm sure there are more to come.

mundane no more

What I thought was going to be a relatively mundane Monday afternoon activity turned into quite the emotional roller coaster. 

You see, Kate's belly is growing at what seems an exponentially fast rate. Her 12-18 months clothes just aren't cutting it anymore. 

So, I headed downstairs to...the room. The room that I just don't dare go in because there is too much to be done! Full of boxes and odds and ends and things I just can't organize quite yet. I shifted some things around and found the two bins I figured I'd need and began to sort through them. 
And that's when it hit. These clothes are more than just old clothes in a bin. These clothes, more than any other clothes we own, have so many memories attached to them. Both beautiful and horrific.

The sparkly skirt Leah was wearing when she took her first steps into my arms. 

The orange and black leggins from her halloween costume the day we got our diagnosis

The striped skirt she wore when we decided to fool a few people

The jacket I remember so well both from waiting in the neurologist's office and swinging at the park

The shirt she wore when I wanted to hurt somebody

The swimsuit she wore while feeding herself goldfish poolside. 

The shorts she wore on her first day of school and when she got stuck and played with jackers

The headbands that adorned her sweet curls - headbands she placed on her head herself. 

The shirt she wore that fabulous day at the zoo

So many pajamas worn by a child too tortured to sleep at night. 

So many clothes once tear-stained by a sweet little girl and her parents.

And today, some were covered in tears again. 

It seems to be a roller coaster of grief and acceptance I'm on. And I think I went through an entire ride or two today. Here's to hoping the clothes only create this kind of emotion in me today, not every time Kate's chubby little body dons them. 

If not, there's going to be some other sweet 18-24 month old wearing some pretty darn cute clothes!

So much for mundane. Ugh.

Thursday, September 5, 2013


So I guess I have a thing for trying on glasses lately? 

A few notes:
1) Always make sure you enter in the correct measurements when trying on glasses virtually. 
2) My dad was ahead of the times and I had no idea. He wore aviators years before anyone else!
3) Kate is often not amused. Oh well.
4) Leah never. sits. still. Like ever.