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!" 
"Leah!!!!"

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!

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

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

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

September:
20 years
KTG: 15 months (and then some)
Glasses
Mundane
Pavement

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

glasses

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.

Wednesday, September 4, 2013

ktg: 15 months

I know, I know, this post is almost a month late. But since her appointments and updates only come every three months right now instead of every  month, it's as if I'm just a week or so behind. That sounds way better. 

Plus, the major reason for the delay was insurance. Coverage started Sunday, September 1. Monday was a holiday, so you better believe her appointment was first thing Tuesday morning. 

Kate did great (obviously, her name is Kate the Great!) and she's growing like a weed. A seriously short-legged chubby weed (which is reminiscent of her mother's growth for the first 14 years of her life...hope she is willing to embrace the cankles). 

Kate is hilarious. And dramatic. And smart. And sassy. And kind of a diva. She keeps us entertained all day long (and sometimes into the night). 

She is learning new things every day and wants to do everything herself. Each morning as we wait for the bus to get Leah, Kate pushes her stroller in circles in the driveway. She pauses intermittently to put her sunglasses on and take them off, but other than that she's on the go. 

Meal times with her are a big circus. She's kind of a picky eater, but is learning that I don't really care. She eats what we eat, or she doesn't eat. And there have been many a meal that she simply doesn't eat. (I feel okay about it because she's got some reserves in a few places if she gets hungry.) If she doesn't want to eat something, she lines it up across the edge of the table, just off of her high chair tray. Or she throws it on the ground - whatever she is in the mood for. She does love tomatoes, corn and yogurt. As for purchasing the food that she may or may not eat, she's hit and miss. Sometimes she's great in the cart. Other times she's that child that is squealing in the store and throwing things out of the cart.

Kate is really great at following directions...when she wants to. She gets her shoes out (and sometimes her jacket, even though it's 90 degrees with crazy humidity) every time we leave and puts them away first thing when we get home. 

She loves to dance and has some pretty incredible moves. She twirls, bounces, rocks and grooves everywhere she goes - she just can't help herself! She is constantly trying to climb on things and often has her leg out in an arabesque. Her new favorite is to walk backward with a twinkle in her eye like she is doing the most mischievous thing and plop herself in somebody's lap. When this happens she usually has a book in her hand she wants us to read to her. But 7 seconds later, she changes her mind...sadly still no attention span for books. But we're trying.

She has incredible fine motor skills and honestly is fascinated with how things work. She would much rather stack, twist, turn, empty, fill and inspect one toy for an hour than read a book any day. I think she might grow up to be an engineer.

She is in charge of opening and closing the garage door and she takes her responsibility very seriously. If something in the house is open, she closes it (even if I'm using whatever it is that's open, like the fridge). If a door is open, she walks through it (even into rooms she knows she is not allowed). She love sneaking into my bedroom and getting all sorts of little trinkets out of Ryan's nightstand and messing with the Vaseline in mine.

She just sprouted her 7th tooth (she had six on her actual 15 month mark). 

She sleeps from 7:30-7:30 usually and takes two naps a day, averaging about 4-5 hours total. And before she goes to bed, I put her blanket on my shoulder and she nestles in and rests her head for a few minutes before I lay her down. It's probably one of my favorite moments of each day.

She tolerates the tub for about 5-10 minutes and then she's done. She did learn to love swimming pools this summer. Hooray!

She isn't speaking as much as Leah was at this age. She knows a duck quacks and a dog pants and she mimics a lot of words and sounds. Her constant words at this point are: mama, dada, ball, box, sock, hi, bye, stinky, yuck, yes and backpack. We've heard her say a few words like yellow and grandma, but not on a regular basis. Her go-to word is no. She usually says it loudly, multiple times in a row, with confidence, while shaking her head and waving her arms. NO NO NO NO NO! She knows quite a few body parts (eyes, nose, mouth, toes, feet, fingers, arms, belly, head, hair and teeth for sure). She sticks out her tummy and slaps it all dramatically when you ask her where her tummy is. She closes her eyes with a slight flutter when asked where her eyes are and she wiggles her fingers and toes to let you know where they are located.

She would rather die a slow and painful death than keep any sort of hair accessory in her hair. But I am relentless and she is learning. Still no headbands, but we're breaking her down with pigtails and bows. However, when she does pull the elastics and accessories out of her hair, she is very obedient and hands them right to me. Sometimes holding them in her hand for an entire car ride to do so. 

She is my little helper around the house. She loads the washer and dryer, puts her toys away, tries to feed Leah her treats and unloads the dishwasher (usually when I'm loading it). 

Speaking of Leah, she is the only one who gets consistent kisses from Kate. Sometimes when Ryan and I ask for them, Kate does her classic NO shenanigans. But if we say, "Kisses for Leah!?" she opens her mouth wide with an aaaaah sound and gives them freely. It kind of melts my heart. On the other hand, every time she walks by Leah, she does so with a bit of a grimace - she's been smacked a few too many times and knows what is inevitably coming.

Kate is my buddy and I'm so happy I get to hang out with her all day every day. She makes me laugh and she makes me crazy and I love every bit of her 15 (almost 16) month self.

Official stats:
Height: 30 inches (28th%)
Weight: 21 lbs. 15 oz. (28th%)
Size 18 month clothes
Size 3 diapers
Size 4 shoes (loves, loves, loves shoes)










Monday, September 2, 2013

twenty


The year is 1998. The place is the choral room at Skyline High School in Salt Lake City, Utah. My good friend Haylie and I are arguing. It goes something like this:

"Oh yah? Well, my dad's wings are bigger than your dad's."

"Well, my dad can fly higher than yours can."

"Mine can fly faster!"

"Yah? Well my dad's robe is brighter than your dad's. And he sings more angelically."

I know, we were really going at it.

Wait, that's not how you fought with your friends in high school? Huh. Well, that's how Haylie and I coped. My dad had passed away five years earlier and hers just earlier that year. Our heavenly "my dad" quarrels were how we buoyed one another up and helped each other feel a little less alone. How we brought a little bit of laughter into something that might otherwise just make us sad.


Fast forward a few years...to today. Because today it has been twenty years since my dad has been in my life, at least physically. I've done a lot of pondering over the years as to how his absence so early on has affected me and my life. And I can, without hesitation, say the effect has been large. 

I think about him every time one of my friends argues with or says something contrary about their own dads. I think about him each time I watch someone dance with their own dad at their wedding. Or when they talk about how much their kids just love their grandpa. I think about him every time BYU plays (and am a little grateful he's not around every time they lose). I think about him when I drive by a golf course or see the blue leather chair in my brother's house or see an infomercial or visit Lake Merwin. When I hear the word "cardiac" or smell the hand sanitizer in a hospital. I think about him each time I sing the song Mairzy Dotes or call my girls sweet cheeks. And I thought about him a lot this summer when I stayed at my aunt's house and she showed me old photos and told me old stories. 

And sometimes I feel a little sad. Sometimes I feel a little lonely. Sometimes I feel a little empty and wonder what if. 

But then I remember that just because he's gone, doesn't mean my life is empty. In fact, my life is really quite full. It's just been filled with different things than it otherwise would have been. Twenty years of experiences, people, places, thoughts, hopes and dreams altered just a little because of how that experience changed me. Because it did change me, but it doesn’t define me. I do think about it, but I don’t dwell on it. I do miss him, but I still feel his love.

I often think of this quote by Elder Richard G. Scott. He says, “The challenges you face, the growth experiences you encounter, are intended to be temporary scenes played out on the stage of a life of continuing peace and happiness. Sadness, heartache, and disappointment are events in life. It is not intended that they be the substance of life. I do not minimize how hard some of these events can be… but they should not be allowed to become the confining focus of everything you do. Your life can and should be wondrously rewarding. …That perspective keeps challenges confined to their proper place – stepping stones to further growth and attainment.”

And I think he hit it spot on. That Thursday morning twenty years ago permanently changed my perspective on many things in life. But I think it also gave me an advantage. Because really, my dad’s wings are bigger than your dad’s.