tekas

It's a sad, sad day when one of your closest friends moves hours and hours away. It's even sadder when her kids are some of your kids very best friends (and, sometimes, best frienemies). 

The Friday before we left for Utah, some of our very best Iowa friends were planning to move to Texas. They were on the way to the airport when plans changed and my friend had to head to the ER and ultimately had some unplanned surgery. 

We had already said our teary goodbyes and I hadn't planned on getting to see them again at all. And though the circumstances weren't ideal, I was lucky enough to be free and got to spend the entire day with her three darling kids. I adore them and so do my girls, so it was a pleasant surprise indeed. 

We miss them every day! Kate still thinks every time the doorbell rings, it's miss Layla. Then she usually pauses and says,  "No. Layla in Tekas." 

I'm already planning a mid-winter roadtrip to "Tekas" when Iowa seems unbearable. Get ready for us F family!

may in an instant

May started out with all four of us at HOME...and it's ending the very same way. 

It was nice to just kind of "be" after a few months of go go go. Don't get me wrong, we were still busy, but it was a great kind of busy. Busy celebrating anniversaries and little birthdays. Busy working and playing in the yard. Busy attending end-of-year celebrations. Busy barbequing. Busy running (but not for four hours at a time). And busy enjoying the (finally) incredible weather. 

That's my kind of busy. 

on giving myself some credit...and a break

I have a list a mile long of things-I-must-get-done. Some of these things are, actually, things I must get done. Some are...not. 

Catching up on my blog (um, Boston? Turkey!?) has been high on my list every single day and things always get in the way (the actual things-I-must-get-done). For a few weeks it was our internet connection. That is finally fixed (Mediacom is a bad word in our house). Now it is the gathering of pictures. I've half-written most of the posts, they just aren't ready to be published...and I feel like I need to give myself permission to cross it off my list for a bit. 

So...self, take a break. 

There. I did it. I gave myself permission. 

It feels really good. 

School's out for the year (yay and eeeeek!) and I've got some things on my plate for the next few weeks, so you won't see a lot of action over here for a bit (as if that's unusual as of late?). But I'll get it all recorded. I want to do it for myself, so it will get done. I just needed to not feel guilty about it.

So, with the publishing of this text, I no longer feel guilty. Ta-da!

I'll leave you hanging with a picture of Kate the Great posing (Seriously! She poses!) in front of Honest Abe's home in Springfield, IL. A picture we took on our 22-hour getaway for Memorial Day...which will also be posted when I return to the digital world.

Catch ya on the flip side. 

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. 

backyard

When we moved into our house last summer, we were thrilled to have a backyard all to ourselves. Ryan and I have never lived in a house before, let alone one with real estate that is meant for just us. The flower beds were renter-proofed (filled with rocks) and the lawn had seen better days. The first day we went outside to relax in it, we rested in weeds, bugs and rough, pokey grass. 

The yard was a lot of work throughout the fall and winter what with our three large maple trees (and their leaves and roots), but the big hill in back proved to be perfect for sledding (those four days that there was sufficient snow and the temperatures weren't frost-bite worthy).

As spring arrived and the sun showed its face, we decided we really wanted to enjoy the yard this summer. So, we invested in some lawn care for the bugs, weeds and overall roughness (and it's working!). Ryan enjoys his weekly workout pushing the lawnmower up the uphills and trying to keep up with it on the downs (still wearing those incredible shoes!). 

We purchased a box from Target and turned it from this:

to this:

Then another box and turned it from this:

to this:

Then we dusted off the special needs swing seat we purchased on Amazon a few years ago (knowing we couldn't pass up the price and that we would have a swing set one day!). You should have heard the giggles.

Swinging sisters are the best. 

We removed the infested grill that previously protruded from the middle of the deck (and had since probably 1970), added a rug so we wouldn't contract any diseases from the splinters that would have inevitably lodged themselves in the bottoms of our feet, and were gifted some chairs, where Kate happily tested her first Popsicle (a bold move by mom as Kate was wearing white pants...but she did surprisingly well!). 

I think project enjoy-your-backyard is off to a good start. 

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