Springfield, IL

We're trying to take advantage of the fact that, even though we live in the "middle of nowhere", we actually live so close to a lot of incredible places! We spent a quick 22 hours over Memorial Day exploring Springfield, IL - the land of Lincoln! 

Our first stop Monday morning was the Lincoln Home National Historic Site. It's the smallest national park in the United States, just a few blocks in diameter, but it is the location of the home Abraham Lincoln lived in with his wife and children for 17 years before he left in 1861 for the White House. A park ranger took us on a tour of the house (where Kate decided to throw a mini temper tantrum at the bottom of the stairs - nothing a few iPhone selfies couldn't fix). And then we wandered the street taking in the historic feel and touring a few other homes that housed artifacts and information galore. 

{check out the wallpaper and carpet surrounding his writing desk!}

Our next stop was the Abraham Lincoln Presidential Museum, which I highly recommend. It was amazing and actually had fun things for all ages and interests. They had a holographic theater show about Lincoln as well as a special effects show about the Civil War. We walked through a replica of Lincoln's childhood farmhouse as well as the White House as it looked in 1860. I was completely impressed with all of the exhibits. There was a powerful 4 minute video showing a map of the United States and it changed, day by day, depending on who had control over each area (the Union or the Confederates) as well as a growing tally of deaths for each party until the war was over. 

{The special effects show was apparently so riveting it put Leah to sleep!}

Kate and Leah had a great time in Mrs. Lincoln's Attic where they could dress up in various uniforms and dresses, play with a dollhouse version of Lincoln's Springfield home, cook in a kitchen typical of the mid 1800s and even play with Lincoln Logs. It was perfect! 

After the museum we drove to Lincoln's tomb. The girls had both fallen asleep in the car (can I get a hallelujah!?) so Ryan and I took turns walking around the grounds and entering the beautiful marble monument to see the 16th president's final resting place. It was a beautiful afternoon and a wonderful place to be to honor our country on Memorial Day. 

After the tomb we drove around town a bit and decided to stop in and see the Illinois State Capital. It's a beautiful building inside and out with an elaborate dome at the top. We climbed up a few flights of stairs...and down a few flights of stairs (anything to keep Kate busy)...and wandered around the fountains and the giant statue out front (best foot picture ever!). Until it started to rain. And then pour. So we ran back to our car and headed home. 

It was a fabulously fun and jam-packed 22 hours perfectly close to the middle of nowhere.

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. 

CD release party

Earlier this week, I got an email from the mother of a darling girl in Leah's class. She wondered if she could have two additional Team Leah Bean iron ons for a local Rett syndrome fundraiser she was going to be working at the coming weekend. 

Um, yes. 

And also...a Rett syndrome fund raiser that I don't know about? Do tell! 

I sent the iron ons to school with Leah the following day and asked her a few more questions. It turns out one of her professors was the wife of a musician named David G. Smith who was having a CD release party that weekend. David and his wife are good friends with a family in the area who have a daughter, Ariel, who has Rett syndrome. So, David decided to turn his entire release party into a fundraiser for the IRSF...just because. 

What are the chances? And how amazing that this wonderful mom would have a connection to Rett syndrome and want to spread awareness by wearing a TLB shirt! 

I did a little more research into the CD release party and learned that it was open to the public, so Ryan and I decided to make a date night out of it. 

It was a wonderful celebration with great energy, music and people. We were fortunate to meet Ariel, who is in her early 20s, and her family. We chatted with her mom, Mary Lou for quite awhile. Mary Lou was completely flabbergasted to learn of a new family in the area. There was also a local grandmother of a Rett girl who lives in Texas who attended and it was so great to meet and talk with her. 

All in all, a great night making new connections and meeting more wonderful people in Rettland. 

Following is a letter written by Mary Lou, Ariel's mom, on the David G. Smith website:

RETT SYNDROME: A SPECIAL LETTER FROM ARIEL'S MOM

--MARY LOU REITER-KEAN

DAVID G SMITH ONE HOUSE CD Release Party

Rett Release; Help Force Rett Syndrome to Release its Devastating Grip

“Ariel” isn’t just the title of the tenth song on D G Smith’s One House CD. In true D G Smith style, there’s a real person with a real life story behind this poignant song. Ariel is my daughter, and her real life story is Rett Syndrome. 

Rett Syndrome is cruel and unrelenting. The first 6 to 18 months, it is fairly silent. Unaware of its presence, we believe our beautiful babies are perfectly healthy. Then it gradually begins to expose itself, by slowing and halting developmental milestones. Ariel’s sweet little voice saying, “Mama, Dada, Byebye…,” fell completely silent, never to be heard again. Fears grew as more unsettling clues began to surface.  Frantic and powerless we witnessed the grip of RETT tighten as it worsened into regression. Purposeful hand use, which allowed her tiny fingers to grasp Cheerios, and deftly turn single pages in books, was cruelly replaced with highly useless and frustrating repetitive hand-wringing. We witnessed a heart-wrenching stage with no eye contact, and inconsolable crying. As the nightmare continued to take it’s toll piece by piece, we continued to search frantically to find an explanation as to why we were losing her to this foreign realm. Powerless to halt the unknown, we would eventually learn we were to remain powerless even in the answer. The problem was a diagnosis of Rett Syndrome, the solution does not yet exist, and the reality is pain and shattered dreams.

Rett is caused by mutations in the MECP2 gene, which produces a multi-functional protein that regulates the activity of a host of other genes crucial to normal development. In most cases, the damaged copy of MECP2 can be traced to the paternal form of the gene, the result of a random sperm mutation. With rare exceptions, Rett Syndrome is sporadic, rather than an inherited disorder. In fact, the incidence of recurrence in a family is less than 1%.

Rett causes many health problems in addition to the obstacles and restrictions to daily living:

EEG abnormalities, seizures, and disruption of normal sleep patterns are commonplace

Twisting of her spine is caused by scoliosis. Other orthopedic issues exist, including fragile bones

Teeth grinding, decreased body fat & muscle mass, muscle rigidity & spasticity, & parkinsonian tremors

Reflux, constipation, lactose intolerance, drooling, difficulty chewing, swallowing are her GI issues

Extremely poor balance, unsteady gait, inability to solely maneuver uneven terrain, stairs or seating

Lacks any ability to catch herself when falling. Or defend herself from a stinging insect, a flame, an aggressor…

Episodes of breathing dysfunction in the form of apnea, hyperventilation, air swallowing, and breath-holding

An impaired cardiac and circulatory system can have deadly consequences. Lower extremities often cold, and purple

Speech, and thus the ability to communicate even basic needs exists only if you can read her sparkling eyes.

Every task of daily living must be done for her since purposeful hand use is non-existent. The things we take for granted-

-She cannot feed herself, hold a drink, brush her teeth or hair, toilet or bathe herself, get into bed, cover or clothe herself.

-She cannot put on a CD, turn on the radio, read a book, change the channel, or text her peeps

-She cannot scratch an itch, or tell us what she thinks is so funny.

-She cannot tell us, when she is crying, if she is sad or in pain, why she is sad, or where it hurts.

-She cannot tell us if she’s hungry or thirsty, or what she’s hungry or thirsty for.

Ariel requires total care 24/7/365/…for life. Even though Ariel’s sparkling eyes can speak volumes, we are often left to guess and assume much on her behalf. Her personality, her dreams, her voice, and every freedom, was taken from her long ago. For her patience alone, Ariel is truly an angel.  

At present, she is one of 35 known cases in Iowa. Rett occurs worldwide in 1 of every 10,000 to 23,000 female births and strikes all ethnicities. Incidence in males is rare as the culprit gene, MECP2, is on the X chromosome. First recognized in 1982, the prevalence of Rett equals that of Cystic Fibrosis, Huntingtons and ALS but is vastly underfunded in comparison.

Why is Rett Syndrome research so important? Recent exciting breakthroughs toward possible treatment, and even a cure, allow us greater hope for Ariel and every beautiful soul struggling to live with Rett. But the expanded picture is the relevance Rett research has in curing other disorders. Because Rett is the most physically disabling of the autism spectrum disorders, it is said to be the "Rosetta Stone" that may help unlock cures for disorders with genetic links, including autism, schizophrenia, Parkinson's, and other autonomic nervous system disorders. (Check out Dave’s song Doesn’t Take Much Light) 

If you are interested in learning more talk to me, or check out the many Internet sites on Rett Syndrome. You might start with the following: http://www.rsrt.org/research/  orhttp://www.rettsyndromeadvocacy.com

And if you like nice people who don’t just talk the talk, (or sing the song in this case) but also walk the walk toward the vision of the world as ONE HOUSE, support Dave’s music. He possesses a sweet and gentle soul, and generously shares his positive energy and talent to make good things happen. Do it!    -Mary Lou

cookies and milk

I had a low-key, relatively impromptu birthday party for Kate and some of her cute little friends. Since two of her loves in life are cookies and milk, we decided to run with the theme and decorate sugar cookies and drink milk.

When the guests arrived, we sang happy birthday and she immediately hid underneath the table, which was, of course, adorable. 

We then spent the next 2 hours shoveling hastily-frosted cookies in our faces and licking our sweet and sticky fingers. The day was chilly, but nice enough to run around outside and try out the new swing set. And as a bonus, only 2 children escaped to the front yard. (Um, yikes! Looks like we need to block that small slit in the fence??)

 

At this age, parties are just as much for the parents as the kids and I think we all, old and young, had a smashingly delicious time. 

As evidenced by the remains. 

All in all, a sweet and delicious celebration for my deliciously sweet (and apparently serious) Katers.  

Kate's cake

I love when I have an idea in my head - and it actually translates onto paper...or cake, as it were. I decided I wanted to recreate Leah's rainbow cake only in a single-color ombre format for Kate's birthday this year. And it worked! Kate chose purple (though I'm pretty sure she's color blind, so who really knows what she was hoping for) and we ran with it. 

Three levels of ombre on the outside. 

Four on the inside. 

It wasn't flawless, but I was pretty happy with the result. 

I let Kate help me with the crumb coat. And then I let her eat frosting for breakfast. It is her birthday, after all. 

ktg: 2 years*

What. A. Year.

Watching Kate grow this year has been an absolute pleasure. I just cannot seem to tire of her incredible functioning hands, her ever-growing vocabulary and her bursting-from-the-seams personality. She just moves with ease and it is amazing to watch. Kate is a spunky, smart, silly, stubborn, two-going-on-twelve year old girl.

Today she took a bath in her birthday suit (my favorite suit), ate cookie dough and frosting for breakfast, went to music class, opened some presents, had a 2 year photo shoot (where she did everything but look at the camera and smile) and had cake and ice cream (with our friends the Flahertys).

These days, you can usually find Kate running in the opposite direction you have asked her to go, speaking in third person and just generally moving.

She is only marginally interested in books and coloring (Leah's two favorite loves at that age). You can instead find her stacking, climbing, running, organizing, engineering, separating and collecting.

She is constantly chatting to herself (and anyone who will listen to her) in a low, sultry voice. Unless she is praying, when her voice rises about four octaves. Her vocabulary is getting quite extensive. She can copy anything we ask her to say (including words like Mississippi River and Bettendorf) and she definitely speaks in sentences. She also loves phrases like "okie dokie," "sorry Charlie," "no way Jose," and "dang it." She is a listener...and a repeater. She knows her full name and has referred to her mom and dad as Maren and Ryan once or twice which just makes me laugh.

She eats like it is nobody's business. But only treats. She cannot be bothered with the usual three times daily meals. Though we are improving on that front and can usually get her to eat a bowl of cereal now without her leaving the table at some point...for some reason.

After only knowing the inside of the house all winter and not remembering anything about nature from last summer and fall, she is all about anything OUTSIDE. And she lets us know all day long. "Outside, outside! Kate outside NOW!"

Kate loves being naked. And she loves telling others that various members of our family are naked...even when they're not. Especially at church. She can take her pants off by herself and I think it is the greatest achievement of her life thus far. She continues to try to get her shirts off, to no avail. She can buckle most of her shoes all by herself and especially loves her "toms," "jellies," and "fip fops."

Her favorite songs are "My Heavenly Father Loves Me" aka the "bird song" and "The Color Song" aka the "pink song" even though 99% of the time you'd think she was color blind. She also loves singing to herself and dancing in the car and playing little games like "This Little Piggy."

She now has 16 teeth and loves, loves, loves to brush them with "oof paste."

She is very much attached to a tie dyed pink bear given to her by one of the lovely ladies in my water aerobics class. And she is rarely found (at home) without her red blanket. She was weaned from her binky in February but still asks about it every once in awhile. When I ask her where it is she responds, "binky broken" in a very matter-of-fact way.

Kate weighs 23 pounds (which means she hasn't gained any weight since her 18 month checkup! Oops!) - 12th percentile. She is 32 1/4 inches tall - 19th percentile. She wears size 2T clothes (with an occasional 3T shirt to provide ample room for her belly and an occasional 18 month pant for her stubby legs). She wears a size 4 diaper and has shown no real interest in potty training and I'm not about to rush it!

She is definitely a mama's girl and I love it. She loves to give kisses (of the regular and Eskimo variety), hugs and to cuddle.

Kate is intense in every way. She is intensely happy. Intensely dramatic. Intensely energetic. Intensely sad. Intensely endearing. And she can go from one extreme to the other...and back again...in half a second.

She has an amazing relationship with Leah. Kate already understands and sees things that I could never have even imagined at her age. She seems to know when Leah does things out of her control. And she also senses when Leah might need help and has come to find me on occasion.

Kate has added a lot of life to our home. A lot of excitement. And a lot of normalcy, which is probably the best thing we could have ever asked for. She is definitely a gift. And I can't wait to see her continue to grow.

*...and a little bit as this info includes some of June 2014 as well.

mother's day, take 8

The past seven years as a mother have simultaneously flown and crept by. I have no idea how in the world more than seven years have so quickly passed, yet it feels like I have always been a mom to my darling girls.

I posted a picture on Instagram with the following caption, "It's been an emotional day as I think about my 7 years as a mom...and a bit overwhelming as I think of my role in the years to come. Motherhood has been more intense in every way than I ever could have imagined. Harder, happier, more satisfying and stressful, more gut-wrenching and gratifying and definitely more full. I have a long way to go but am so blessed to do it next to these two beautiful girls with the example of my own incredible mom."

I feel like I have done a bit of growing this year - becoming more comfortable with myself as a mom and with my girls. They could not be more different. Leah is quiet, but loves the spotlight. She's tough as nails, but absolutely has her moments of weakness. She has a sneaky sense of humor and is just plain fun to be around. At the same time, Leah has stretched me far more than I ever could have imagined and it is the further stretching I know is down the road that terrifies me to tears sometimes. 

Kate is fiercely independent (Ryan calls it stubborn and we're both certain she got it from me...so, fiercely independent it is). She is hilarious and crazy and inquisitive. She hates sitting still, but I think she's more of an introvert like her mom and dad. She's learning to love to read and sing, but would still rather build and explore. She cries at the drop of a hat, but laughs just as quickly.

My home is usually not clean - it's cluttered with toys and blankets, diapers and dirty laundry, shoes and schoolwork. I don't wash, dry and straighten my hair every day like I used to and I often swap my daily date with the jogging stroller for a mid-morning dance party. 

I'm really tired. I cry a lot. And I have so many new wrinkles (no gray hair...yet!). But those girls also give me energy. They make me laugh. And I have tons of smile lines too.

I've tried a little harder this year to put down the to-do list and get on the floor. To stop and look Leah in the eyes. To not cry over spilled milk (or a $700 bottle of medicine). To listen to Kate's imagination run wild. To let my girls be little. And to be there when they need me. I'm so proud of the girls that they are and the good choices they make each day, and I'm learning to be proud of myself for the same reasons. 

Because I know the next seven years, and the seven years after that, and the seven after that...are going to fly by as well. Some days might creep, but the years will fly. And no matter how intense they are, I can't wait to take flight. 

(And for proof that both of my girls do, actually, smile while looking at the camera...just never simultaneously.)

My Family is Blessed...

Leah had the opportunity to give a talk in Primary (the children's group at our church) today. It might seem ironic that someone who can't physically talk would be asked to give a...talk...but we are so blessed to have volunteers in our church who are responsible for the Primary who really believe in Leah and her abilities. 

I sat down with Leah and, with her topic of "Our Families are Blessed when we Follow the Prophet," discussed possible directions for her talk. 

I am being completely honest when I say I probably helped her just as much as I would any other child. We read through a few different talks given recently by our modern-day prophet, President Thomas S. Monson. Leah picked the talk she wanted to focus on. And she was very clear about it!

She then chose each of the parts of the talk she wanted to use. She chose to include part of a song about prophets. And (after suggesting 307 choices), she gave the okay to give three personal examples that related to President Monson's talk. 

The switch she uses is relatively quiet, so it's hard to hear in a big group. So, Leah decided that she would give the intro and closing on her switch and she would let me read the rest of her talk for her. 

Ryan and his parents were all able to see her give it...and she had a few other adults in the room in tears. I really was so proud of her. She worked hard and did so well!!

Our family is blessed with Leah in our lives!

Our Families are Blessed when we Follow the Prophet

Leah Layton Primary Talk || May 4, 2014

Today I’m giving a talk about how families are blessed when they follow the prophet. My mom is going to read the talk for me. 

In the primary song, “Follow the Prophet,” the last verse tells us, “Now we have a world where people are confused. If you don’t believe it, go and watch the news. We can get direction all along our way, If we heed the prophets – follow what they say.”

 

Last month, we all had the chance to listen to our prophet, President Thomas S. Monson, speak to us in General Conference. 

On Sunday morning, he gave a talk about love. President Monson said, “Every day of our lives we are given opportunities to show love and kindness to those around us.” 

• This week at my school, we had a walk-a-thon. My friend Addi showed love to me by walking next to me the entire time. It made me feel good inside.
• I can show love to my little sister Kate by sharing my toys with her and being nice.  
• Another way we can show our love is just by smiling. Lots of people tell me they can feel my love when I smile. 

President Monson said, “May we begin now, this very day, to express love to all of God’s children.” 

I know our families can be blessed if we follow the prophet. 

I say these things in the name of Jesus Christ, Amen.

Easter best

I dressed the girls in their Easter best two Sundays late since we were out of town on Easter (Boston!) and the following week (Turkey!). So here you have my girls in their Easter best...AT their Easter best. That Kate, I tell ya. She's cute, but she's going to have lots of pictures with which I can blackmail her later in life...

 

april in an instant

And just like that, April is over. A month we have been planning and prepping for and dreaming of for the last year came and went in the blink of an eye. 

With final preparations in place for our travels, and the weather taking a serious turn for the better, we left our littles with their "ma and pa" (as Kate apparently likes to call them) and ventured across the country, and then across the world. 

It was a month to remember. And I feel so incredible to have been a tiny part of the things we experienced. More - much more - to come.