june in an instant

Summatime, summatime, sum sum summatime. 

Sunshine, swimming, sweat, strawberries, seizures. Almost everything about summer is simply glorious. I do tremble with fear thinking about long days that lead into long weeks with me as the sole entertainment for my children. But, I do love it. And I REALLY love it on swim days. 

In June we spent three whole days driving so we could run for two days straight. Really, we did. Good thing we love so much about Utah and the people who live there (and the people who visit there the same time we do). And lucky for the Laytons, they all put up with us and our bathroom-flooding shenanigans (that's a story for another day). 

Team Leah Bean Virtual 5k (the first, ever)

Each year as October approaches, I feel a bit of dread. I know, I said October and dread in the very same sentence. Strange. But October marks Rett syndrome awareness month and raising awareness and funds are just not my forte. 

I am lucky to be surrounded by so many Rett moms and families who thrive on spreading awareness, working for Rett organizations and foundations and raising funds toward treatments and a hopeful cure. It seems they live and breathe for it. But my little introvert self just wants to crawl in a corner and close my eyes until it's over. 

Throughout the past two years as we have reached out of our comfort zones and raised funds and awareness as a result of running on the Team Rett for the Boston Marathon, we have had so many people ask how they can continue to be involved, even from afar. So when I suggested a virtual 5k in honor of Leah and to raise funds and awareness for Rett syndrome, we immediately had multiple people on board. 

I went in with hopes of maybe 25-30 runners, raising a few hundred dollars. And when sign-ups closed a few days before October 1, we had 127 people signed up. Multiple times, as I'd receive an email saying someone had signed up, it would bring me to tears. The steady increase in numbers overwhelmed me with gratitude and humility for which I don't think I will ever have words. 

The kinds words written in support of Leah and the impact she has had on others was enough to make this mom's heart burst with joy. 

And then the hashtags started to roll in. #TeamLeahBean5k2014 brought in probably 75 unique images, picturing more than 100 runners. Family and friends from all walks of life. Walkers, joggers and runners from at least 15 different states and 5 different countries. Riders in wheelchairs and strollers. Veteran racers and brave souls participating in their first-ever 5k. Some on treadmills. Some on powerchairs. Solo runners. Families. Large, organized groups. All sporting their kelly or seafoam green shirts and running for our Leah. 

Four our little Leah. 

I really hope you know how much your support means to our family. That every time we see these pictures or see you sporting your shirt, our heart swells with gratitude. And I hope you know that your donation and your support made a difference, and continues to do so.

We will run for Rett until Rett is no more. And we're so grateful you're running alongside us. (And we hope you'll join us for our 2nd event in 2015!)

*The images displayed here aren't all that were posted. For some reason, certain social media sites that shall not be named weren't letting me access all the pictures with our hashtag??? If your picture is missing, or if you still have one you never sent, please let me know!

ten miles

I'll admit, I'm worried about summer vacation. 

For the last few years, those words - summer and vacation - haven't always seemed to fit together. When you have a child that needs help going to the bathroom and eating every bit of every meal, being home all day just sounds like more work. Because it is. 

Now, don't get me wrong. I love Leah. I love being with her. And I honestly don't mind doing those little things for her each day. Sometimes it just makes me tired. 

So, this summer, I decided a few things:

• I want some structure to our summer. Things to look forward to each day or each week. 
• I want the girls to get outside (because, um, we can't do that for 6 months of the year apparently). 
• I want the girls to move their bodies and stay active (watching TV/listening to music and books is the only thing Leah can do all on her own...and it's almost too easy to just let her do it). 

That's when I decided we would have a running/walking goal. If you saw the three of us in action, you might call it a herding cats goal. But however you put it, we have a goal to run/walk 10 miles this summer. That doesn't seem like a lot, but running up and down the hallway and rocking on the couch don't count, so it actually is a lot for the four little legs in my care. 

I have two days each week set aside to do this. And so far, we've gone both of those scheduled days. The girls get about a half mile out and then we turn around, making about a mile each time, depending on how much they wander. 

They stop and smell the flowers. All of them. 

And they pause to rest on the benches. All of them. 

We aren't fast. And we look like a circus. But it wears them out and gives me energy, so, win-win! I'll report back in six weeks. 

Marathon Monday take 2

The much anticipated Marathon Monday morning arrived after a good night's sleep. Ryan and I donned our running clothes and shoes, race bibs, sunscreen and matching throw-away sweats (added security meant no bags at the starting line for runners). Brad, our host, graciously drove us into Boston, dropping us as close to the finish line as possible. After about a half mile walk, we loaded the buses and drove for what seemed to be far too long, passing the time watching the elite runners on our phones. They would finish before we even started. 

The runner's village was just as I remembered it. We quickly found our teammates, took pictures, and made final preparations before we headed to the start. 

I ran with Elissa for the first 13.5 miles, which really means that Elissa was kind enough to slow her pace and stay with  me. Together we passed mile markers, waved at friends, drank a bit of water and gatorade, pumped our fists for cheers of "Go Purple!" or "You've got this Team Rett!!" and just chatted about life. It was a great reminder - after having had no running partners for almost a year - how nice it is to have someone by your side. 

Our friends and family were in the same place as last year - left side of the road in Wellesley right around the mile 13 marker - so there was no guesswork this time. Knowing exactly when to expect them made the miles leading up to them much more pleasant than last year! As we rounded the bend, I saw them. At least 18 people screaming our names, holding signs for Rett, wearing Leah Beans on their shirts, bearing smiles to lift anyone's spirits. The only difference from last year was the solid row of metal barricades blocking them from the street and me from the sidewalk. I gave each of them a half hug over the bars, was assured Ryan was behind me (!!!) and continued on my way. 

Not a half mile later, my right calf seized. As in, I could not run. I pushed Elissa on her way (she would finish 40 minutes ahead of me!) and I stopped to rub out my leg. Sadly, this continued for the remainder of the race. Run, walk, stop to rub it out, run, walk, stop to rub it out. And I'm here to tell you 13 miles is a long way to run like that. Luckily, there were plenty of friends (and strangers) to cheer me on. From Tuck to Rett families, I had company at miles 16, 18, 19, 23, 24, 25 and more, offering pleasant respite while I coaxed my calf into running again. 

I laughed as I ran behind a rather handsome shirtless man through Wellesley - he was VERY popular with the young ladies from Wellesley College. 

I was once again energized by the hundreds of high fives given at Boston College.

I gladly accepted Vaseline BEFORE it became an emergency this year. 

Ryan caught up with my on Heartbreak Hill. As we reached the top, I told him I wanted a picture. He assured me we weren't quite to the top. I assured him we were. He persisted, so we ran on. I was right, so we have no picture. After about a half mile, I stopped to once again care for my calf and gave Ryan permission to beat me this year (which he did by 8 minutes). 

I passed Team Hoyt and silently thanked them for all they've done to ease some of the burdens of the special needs world. 

I stopped for a moment at Charlesgate East and Commonwealth Avenue, 25.5 miles where they closed the course and my race came to an end last year. 

I ran under the bridge. 

I turned right on Hereford.  

I turned left on Boylston. 

And, with Leah on my mind, I ignored my screaming calf and ran the rest of the way. 

And then I finished. 

I finished for me. And all those miles and frozen eyelashes and hours logged on the treadmill. 

I finished for Leah. And all she does to power through all her days. 

I finished for Rett syndrome. And the $185,000+ raised for research by our team and generous donors. 

I finished for Boston. And everything this marathon represents. 

I finished for good. Because good will always win. 

It was a healing day for Boston. The crowds were bigger (if that is even possible). The cheers were louder. The smiles were wider. The congratulations more abundant, more genuine and more thoughtful. And everyone was kinder. More aware. Perhaps just overall stronger and a little better than they used to be. 

Marathon Monday 2014 is one to be remembered. We came. We ran. And we FINISHED what we started. 

meanwhile, back in Iowa

Though we were a little disappointed to not be bringing Kate and Leah back to Boston with us this year, we were so excited to have a new group of supporters! Leah went to school with her new 2014 Team Leah Bean shirt (and her medal from last year). We gave an iron on to her classmates and so many of her teachers, therapists, aides and classmates also wore them! 

I just have to smile every time I think about all the positive support Leah has found at this school. From kindergarten students to the principal - and everyone inbetween - they have just been incredible. Even her bus driver wore a shirt!

Leah's teacher and one of her therapists sent me these pictures with a note that said, "Sending you our best wishes. Go Team Leah Bean!" 

I think Leah liked the attention she got on Marathon Monday.

Even one of her para's sisters wore a shirt and sent a picture from Ohio!

Team Leah Bean

We feel so fortunate this year to have two great friends from New Hampshire running the Boston Marathon to raise funds for Leah, making Team Leah Bean FOUR runners strong! 

For my own sake, I wanted to record some of what they wrote on their fundraising pages in regards to running for Leah and Team Rett.

Elissa was one of the first people I met when we moved to New Hampshire - she went to our church and she was also an instant running partner (a very patient one since she was much faster and stronger on the hills than me!). Elissa is also an incredible pianist and an extremely talented vocalist. That girl's voice can melt butter. She's also a very busy mother of four super cool kids. She is one of the happiest, most helpful and most hopeful women I have ever had the pleasure of meeting. From day one she was interested in learning more about Leah, she included Leah in conversations and activities and she got her own four children personally involved in fundraising for last year's race. Elissa now lives in Idaho and trained through a long and cold winter, sometimes heading out for runs at 4 am so she could be back in time to get her kids off to school.

This is what Elissa had to say on her fundraising page:

"In 2011 I had the privilege of making a new running friend, Maren, and her daughter Leah.  I had never heard of Rett Syndrome before.  I soon learned about the challenges it presents to affected girls and their families.  I listened as Maren told Leah’s story. I watched Maren and her husband Ryan learn to cope as Leah developed symptoms like seizures.  I watched them teach Leah how to communicate with them and the world without the ability to speak.  I admire this family as they, like so many others, encounter and face these challenges with courage, endurance, and hope for a cure.  It is my privilege this year to run the Boston Marathon 2014 in behalf of Team Rett and raise money to fund research for IRSF.  Thank you for your donation!"

Blythe was a classmate of Ryan's at Tuck and eventually one of Leah's horse therapists. Leah just beams when Blythe is around. And I know it's because of the way Blythe treats her. Blythe expects a lot of Leah because she knows Leah's capabilities and potential, and I love that. Some of my favorite memories from New Hampshire are of Leah riding horses with Blythe by her side. Blythe is smart, hard working, compassionate, generous and fun. And as a side note, she had never run more than 3 miles before signing her name on the line and pledging to run a marathon, but she knew she wanted to do it for Leah! Blythe now lives in Colorado and trained through a cold, snowy winter in the mountains, all while juggling some extremely difficult family situations that arose last fall.

This is what Blythe had to say on her fundraising page:

"I began working with disabled children when I was 13, first as a volunteer and then later as a certified instructor in therapeutic horseback riding programs. Through my involvement, I have met hundreds children with a whole range of physical and mental disabilities and been deeply touched by many of them.

"However, despite all my training and experience, I had never even heard of Rett syndrome until I met Ryan Layton, a classmate at the Tuck School of Business, and shortly after his daughter Leah, who was diagnosed with Rett syndrome at 2.5 years old. At the time, I thought I’d seen it all – kids who couldn’t talk to me, kids who wouldn’t acknowledge my existence, kids who were blind, kids with severe physical limitations – and yet I thought I could handle it all. But Leah stopped me cold in my tracks. “Okay, fine, she can’t talk to me – but I’ll bet she can sign! Oh, wait, she can’t use her hands … Oh, but I could use a picture board with her! No, Blythe, she really has very limited even gross motor skills … Wow. How in the world am I going to connect with this little lady??

"Spending time with Leah has taught me more about communication and building connections between human beings than any other person I’ve ever been around. Thanks to the never ending dedication of Ryan and his wife Maren to build a rich, enlivening world for Leah, I’ve had the joy of working with Leah every week in a therapeutic riding program. Through her riding, Leah taught me that you don’t need words or functioning fingers or sometimes even your breath to tell someone you are happy, you’re trying hard, and you love them. All I need to see is how, when I ask Leah to hit the bell to tell her horse to walk on, her face screws up in determination, she holds her breath, we wait, and then … whack goes her hand on the bell! And then, she turns to look me right in the eye with a giant smile on her face saying 'yup, I have Rett syndrome. But it doesn’t matter. Because I hit that bell, and I’m proud of myself.'

"As I’ve gotten to know Leah, and learned more and more about her disorder, I’ve realized that Rett syndrome is as much a hopeful as a scary and difficult disorder. As difficult as it was at first for me to communicate with Leah, I know now that she, and other girls with Rett syndrome, is in there, and that she has a lot to tell me.

"I'm running this marathon because I want to support the research that might one day allow Leah to tell her horse to walk on with words rather than a bell. I love Leah just the way she is, and I have learned so much from her because of who she is now. But she deserves so much more. She deserves the chance to live a full life. She deserves to have the chance to tell us what she thinks, not rely on our guessing skills.

"I'm also running for her parents Maren and Ryan. Despite all the challenges they've faced raising Leah, they are wonderful, loving parents, amazing people, and dear friends. I'm honored to know them and to support them through this run.

"Thank you for your support!"

We couldn't be happier to call Blythe and Elissa our dear friends and are so grateful for their support, dedication and fundraising efforts. 

And, because I know many of you personally donated funds to Team Rett, below is a description of where the money went this year. So thank you!

The Rett Syndrome Association of Massachusetts (RSAM) is thrilled to announce that this year's Boston Marathon Team Rett will be supporting a study out of the lab of Michela Fagiolini at Boston Children's Hospital.  Dr. Fagiolini has been a long-time friend of RSAM and a champion for our girls.  The study is very exciting because it uses a very reliable mouse model with potential drugs in a pathway that has been shown to reverse the symptoms in other Rett models.  This project was recommended to RSAM by the International Rett Syndrome Foundation and has been approved by IRSF's Scientific Advisory Board.  

The Fagiolini laboratory at Boston Children's Hospital (BCH) proposes a preclinical study of two very promising modulators of the NMDA (N-methyl-D-aspartate) receptor, a special type of glutamate receptor in brain cells.  These receptors are critical in synaptic plasticity which is important for learning and memory, and are somewhat impaired in Rett syndrome.  In December 2012, Dr. Michela Fagiolini and colleagues showed that a genetic rescue of an imbalance of NMDA receptor components found in Rett syndrome could improve cellular function and circuitry (Durand et al, Neuron 2012).  Based on this work, Dr. Fagiolini aims to target the NMDA receptor with two drug compounds in a preclinical study in the Rett mouse model.  One is FDA approved ketamine, and the second is a new inhibitor of the NMDA receptor GLYX-13.  Dr. Fagiolini will work together with Dr. Nick Andrews of BCH to evaluate the safety, pharmacokinetic activity and efficacy of each drug.  A second part of this project is to ready a potential clinical trial design should these drugs be deemed safe and efficacious in the animal model.  To this regard, she will collaborate with Dr. Walter Kaufmann, director of the Rett Syndrome Clinic at BCH, to design a clinical trial that will evaluate these NMDAR modulators as potential treatments in girls diagnosed with Rett syndrome.   It is possible that the compounds could quickly move to future human clinical studies as a potential treatment of Rett syndrome, should the preclinical data show positive and robust outcomes.

Boston Stronger

 

One year ago today, I found myself stopped at the corner of Charlesgate East and Commonwealth Avenue in Boston, Massachusetts. Barricaded by yellow tape forbidding me from continuing any farther. After running 25.5 miles, I was 0.7 miles away from crossing the finish line of the Boston Marathon. 

Instead of running down Boylston street, listening to the cheers of the crowd and seeing the glowing faces of my daughters sitting in the front row of the bleachers, I stood exhausted and confused, feeling very unfinished.

Thankfully, the family members and friends who came to support me that day weren't harmed. There are many others who can't say the same. I've gone over so many different scenarios of how the day could have played out. And then I just have to stop myself. Because it doesn't matter what could have happened. What matters most is what actually happened after those tragic events. 

Like I wrote about last year, something changed in Boston that day. Something bigger than the explosions. Something stronger than whatever was in those backpacks. Something so much brighter than the darkness of 2:49 pm.

The people of (and in) Boston pulled together that day - and together, they became stronger than whatever it was that was trying to ruin them. 

Instead of being overwhelmed with sadness or fear, I was overwhelmed with gratitude for the kindness of strangers who clothed me with a garbage bag and gave me water from their own apartments. 

Instead of feeling alone, I felt the love of literally hundreds of family members and friends texting and messaging their hope for my safety. A simple Facebook post that read, "Made it to 25.5. With Ryan now. Everyone we know is ok. I'll try to update as we hear more." received more likes and comments than I thought I had friends. And I appreciated every single one.

Instead of crying tears of sadness, I was cried tears of gratitude listening to the voicemail left by my weeping brother and reading the email from a dean at Tuck listing the families and classmates that were in Boston - to support Ryan and me - who were safe and accounted for.  

One year later, we are better. One year later, we are more aware. One year later, we are stronger.  

And one year later, we will finish what we started on April 15, 2013.  

a newfound appreciation...

Today marks six weeks until the 2014 Boston Marathon. And I've had a realization, a new found appreciation, if you will. You see, thanks to Mr. Polar Vortex (x5 now is it?), Iowa has been a frozen tundra for the last few months. Its coldest and snowiest on record, I've heard. And, though I'm no stranger to cold weather running, a few things have to align to allow me to get out the door:

1. Temperatures that don't cause frostbite in less than 5 minutes.
2. Sidewalks not lined with ice, underneath a fresh layer of snow.
3. Wind chills conducive to running with a one year old. 

So far, not even one of these things has happened for me in the past two months. Seriously, the warnings were to not go outside for more than five minutes for risk of getting frostbite. FIVE MINUTES!

As for number two, I actually like running in snow. I find it relatively peaceful and calming. But I like to leave the skating part to hockey players and ice dancers.

Those wintry conditions + dark skies until 7:30am and then again at 4:30 pm = no running sans kids for me = no outdoor runs. I'm still not completely familiar with the roads in my area, so I'm not going to risk running alone in the dark. And pushing a stroller on ice while trying to run is most likely less fun than run/skating on it myself (but in full disclosure, I haven't tried).

The dreadmill and I have become very close in the last few months. Too close, actually. Of my 207 miles of training since December 30th, a measly 54 of them have been outside (and that includes 18 glorious miles in California). For all you number crunchers out there, that's 26%. 

Which leads me to my realization/appreciation. Because the other 74% have been inside on my trusty treadmill, I've had a lot of time to stare off into space at my 1960s wood-paneled basement wall, feeling like a mind-numbed lab rat. Running round and round and round on my rubber wheel for hours at a time.

But that's when it hit me. 

A lab rat! 

Research for Rett syndrome! 

That's what this whole thing is about! 

And honestly, underneath all the moaning and complaining about where I'm running, I am truly grateful for the ability to run at all, and for the opportunity to run for Rett syndrome. For Leah. To raise funds for life-changing research. To finish what we started last year. 

I'm grateful for my treadmill. And I'm grateful for those little rodents. 

And so I run. And run and run and run. Sometimes on a treadmill, sometimes outside. It doesn't really matter. For Boston 2014, I run for Rett. 

Please consider a donation to our 2014 Boston team on behalf of Leah's runners:

Blythe:

http://www.crowdrise.com/RettSyndrome2014BostonMarathon/fundraiser/blythechorn

or Elissa:

http://www.crowdrise.com/RettSyndrome2014BostonMarathon/fundraiser/elissajones

Racing for Rett

In the span of 8 days, we've been a part of two virtual races for Rett syndrome, both supporting Team Rett for the Boston Marathon. 

The first race, Outrun Rett, was a 5k held on March 1st or 2nd that people all across the country participated in, including some of our good friends. A simple thanks just isn't enough Michelle, Tara (and Layla), Candace and Krista. But hopefully you already know how much we love you. (And Michelle, I have to admit I might have said a few swears in my head when I was running on my treadmill for fear of frostbite and you were running in sunny California. Forgive me.)

The second race just Ryan and I participated in. It was a 5k held on March 8, but I ran 18 miles instead. I just couldn't resist? We'll say it was the first 3.1 miles of my 18 total as those were definitely the best. That was a loooooong run. But it was outside so I will refrain from further complaints. 

We love the idea of bringing people together for a good cause with a virtual race. Thinking about putting one together for Leah this fall - anyone interested!?!?