a lesson for them and a reminder for me

A few weeks ago, the boundaries of our local church congregation (ward) were changed. Our former ward ended up being split three ways and our current ward boundaries now include families from both Illinois and Iowa. We longer meet with many of the close friends we have made the past nearly two years and our congregation as a whole is much smaller. 

Change can be hard, and it takes time to adjust, but I honestly was more worried for my girls than I was for myself. Kate went from having 17 friends in her nursery class to 4 boys younger than her and (luckily) one girl just her age. For Leah in particular, change is tricky. Though she seems to adjust well, there are a lot of logistics that need to be considered. New faces are most likely not familiar with her hyperventilating or breath holding. A seizure mid-service might make some individuals uncomfortable or scared. New kids in her own Sunday School class might not know how to interact with or include her. A whack in the face from her uncontrollable hands can be quite startling, not to mention painful. 

Yesterday, her new Sunday School teacher (who already knew Leah quite well), asked me to come in and talk with Leah's class about Leah and Rett syndrome. I planned to do it with Leah by my side, but her seizures had a different plan, so she was sleeping next to her dad (don't worry, he wasn't sleeping) on the couch in the foyer. 

So, I entered the room solo to teach about 10 seven, eight and nine year olds all about little Leah. It ended up being not only a lesson for them, but a reminder for me. 

I asked for two volunteers (all ten jumped out of their seats). When I picked two, we'll call them Billy and Sarah, I asked them to come to the front of the room. Billy was to think of something he did this past weekend that Sarah didn't know about. Billy thought for a moment and then mentioned he was ready. I then asked Billy to tell Sarah all about what he did BUT he couldn't use his hands and he couldn't speak at all. 

The look on his face was priceless. But, he thought for a moment and then began. Only he started to use his hands, so I had to tell him that wasn't allowed. He thought again and then started making motions with his body. Moving his body back and forth, trying to move his face, even making a few grunting noises. Eventually he began to nod his head up and down, back and forth. Sarah's face was drawing a blank and Billy was getting kind of frustrated. 

After about a minute, I asked Sarah to tell me what Billy did this weekend. As you might guess, Sarah was stumped. 

I then explained that Billy just must not have been thinking of anything at all. Otherwise he would have been able to tell Sarah all about it. Billy quickly interjected - he WAS thinking about something. It was just impossible to do it without his voice and hands! 

So, we asked Billy to tell us what he did - with his voice. He explained that he watched a Harry Potter movie with his sister. His head bobbing was his attempt to spell out the name of the movie with his head. 

We then had a great discussion about how Leah has thoughts just like they do. She has questions and comments. She has answers to the teacher's questions. She has funny things to say and comments about her weekend. But she has a body that doesn't allow her to communicate those thoughts very easily, if at all. 

We then spent a minute talking about how Leah CAN speak with her eyes, as well as other ways she can participate and be included in class. We talked about her breathing, her hand movements, her seizures. We even talked about her broken finger at length - way to make me feel like super mom all over again! 

My heart swelled as these kids asked question after question about Rett syndrome and had ideas about how they could talk with her. And I noticed for the rest of the day how friendly they were to her. Not in a condescending way, but in an "Hey! I really like you!" kind of way. 

Knowledge is power, my friends. And knowledge in the hands and minds of these kids as they learn to navigate this world alongside peers who are different from them is extremely powerful. And reminding a mom of that knowledge is an important and humbling thing too. Especially when said mom has been struggling to be patient lately.

Change can be hard and it does often take time to adjust. I'm grateful for a group of eight year olds for helping me to speed up that adjustment time and embrace the change.  

*Picture of Leah after church on a Sunday stroll. Church dress, sagging socks, tennis shoes, slept-on ponytail hair, sunglasses and spilled-on spring jacket. The girl can pull off any look, don't you think? 

not speaking

I find myself at a loss of words when it comes to this post, which I guess is appropriate considering the topic for which I have no words is the Not Speaking campaign for Rett syndrome organized by Rettland Foundation. 

This October, many joined together and took a pledge to NOT speak for one hour in an effort to raise awareness for Rett syndrome. Other forms of communication were allowed, but no speaking. Stickers were provided for each participant to wear as well as cards to pass out with information about Rett syndrome. 

We had some family and friends sign up and support us, which we are so grateful for, but I was really touched when Leah's 1st grade class decided they would collectively not speak for an hour. 

Yes, 17 six and seven year olds NOT SPEAKING for an hour. Their lovely teacher had them begin during the last 30 minutes of instruction and then continue for the next 30 minutes as they traveled home. 

After the experience, she wrote an email describing some of their thoughts and feelings and her words are much better than mine. 

"I'll start off by saying my expectations were low when deciding to ask 17 six year olds to be silent for ANY amount of time. Let alone an hour. I just have a VERY chatty group this year, so I knew it wasn't going to be easy... Or so I thought.

They not only surpassed my expectations, but they shocked me! They really did 'not speak' for the full 30 minutes!! If only I could use this campaign every day! I'm not sure how they did once they left my classroom to head home, but they each worked so hard before dismissal. There were a couple of slip-ups and then others would take it so seriously and remind them to be quiet. I even heard a girl whisper "For Leah!" which completely melted my heart. It was amazing and touching and so cool to witness.

The next day we discussed the experience while sitting in a circle. Leah joined us so the kids could ask her questions as well.(Leah was also in the room for the "not talking") Many students said "it was hard" for various reasons, most being that they couldn't communicate what they wanted. One student, told the class the hardest part was when a friend couldn't read the card and his friend started thinking he was mad and didn't want to be his friend anymore. He used the word frustrating to describe how he felt, and he admitted he finally cracked and talked "just a little" to tell his friend the real reason he wasn't speaking. You could tell he was truly conflicted over it. It led to a great discussion about how frustrating it must be for Leah ALL the time, and when we asked her - she gave a very big YES! it is frustrating sometimes.

Some students shared things they did to help them communicate... Writing notes, using our mini whiteboards at school, or even hand motions. On student raised her hand and asked "But what does Leah do, since she can't really do those things?" Again, was a great point that we were able to discuss. Leah told us "yes" she can use her hands sometimes (with a switch or cards) but that it was hard.

When I asked what they learned, a student explained they learned more about what is was like to be Leah or any girl with Rett syndrome. We talked about how that was the point of this experience and hopefully others learned a little, too, when we "talked" to them.

We finished the discussion with a picture and I believe Leah LOVED every minute of the attention and celebration."

After their discussion, the kids in her classroom wrote about their experience. Here are some excerpts of what they said:

"It was hard I couldn't speak to my friend and my friend couldn't speak to me. It is not easy to be Leah."

"I learned it is hard. I had to write on a piece of paper."

"I couldn't tell my mom how my day was."

"At my house my friend came over and it was hard to ask which game he wanted to play. I used my fingers to tell my mom to help. It was pretty hard. I loved it."

"I had trouble on the bus because other kids tried to talk to me."

"I feel bad for Leah, but she is used to it. I am not."

"I think that it's hard for people that have Rett syndrome to do what they want to do."

"It taught me that kids that have Rett syndrome can not communicate how we can."

"It was hard! The frustrating part was when I had to ask to go to the bathroom, but I couldn't!"

"If you wanted to tell someone to stop, you couldn't and that was hard."

"It was hard, but also exciting because we got to know how it is to be Leah."

"Leah talks with cards. I learned that people talk in different ways."

To be honest, I find so many of these revelations so eye opening. But there are a few I really love. 

"It is not easy to be Leah."

That student is so right. It isn't easy to be her. And yet, more often than not, she makes it look easy-ish because of her attitude. I need to be continually reminded of how NOT easy it is to be Leah. 

"I feel bad for Leah, but she is used to it. I am not."

There is so much truth in this statement. She is used to it and there is something to be said about this life becoming Leah's and our family's norm. We have worked hard to adapt over the past six years and some things have become easier. Thank goodness for that.

"It was hard, but also exciting because we got to know how it is to be Leah."

It makes me so happy to know that other kids are excited to get a better glimpse into Leah's life and the things she struggles with on a daily basis. They are excited! They want to get to know her and wonderful opportunities like this make that possible. 

In the end, the gratitude I feel for those - old and young - who participated in the Not Speaking campaign leaves me a little, well, speechless. 

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!

Diagnosis Day take 5

Today I wrote the following on a picture I posted on Instagram, "Five years ago today, I answered a phone call that brought be to my knees, officially bringing Rett syndrome into our lives. It was one of the loneliest and lowest days of my life. Today, 25+ faculty and staff members at Leah's elementary school gathered on the track after the final bell to run a 5k for and with Leah. My life has taken a course I never could have imagined but I am so grateful for all the wonderful people we have met along the way. Today, I felt the opposite of lonely..."

Sometimes when I think about that dreary day in 2009, it still takes my breath away. And not in a good way. In an I-don't-remember-how-to-breathe-because-my-life-is-spiraling-out-of-control kind of way. If I could travel back in time and kneel down on the kitchen floor with 2009 Maren, I would. I would hug her. And cry with her. And I would tell her it will be okay. Because goodness knows that Maren on the floor didn't feel that way then. I wouldn't give her false hope or fill her mind with rose-colored depictions of what day-to-day life will be like in her future, because that wouldn't be honest. But I would tell her it will be okay.  

I would tell her that yes, without a doubt, it will be hard; probably the hardest thing she will ever have to face. It will be a trial she will wake up with every morning and fall asleep with each night, forever. I wouldn't tell her this to scare her or aid in any more lost hope than she had just given up with the phone call she just finished. I would tell her this to prepare her. 

But, when she was ready, I would tell her she won't even be able to imagine the incredible people she will meet in the world a (yet to be made) friend Colleen coined, "Rettland". She won't be able to fathom the number of lives that cherubic little girl in the next room will touch. 

I would tell her about the incredible teachers and aides and therapists Leah will have in every state she lives and in every school she enrolls (oh, right, 2009 Maren...you will move 3 times in the next 5 years and Leah will go to 5 different school programs). 

I would tell her about running marathons and 5ks and strollathons and raising thousands of dollars for research and awareness. 

I would tell her about eye gaze technology and how in less than 5 years, her daughter will start to read. 

And I would tell her that in a short amount of time she will not only be reaching out to other Rett families and asking for information and support, but newly diagnosed families will be reaching out to her. 

I would tell her Leah will be stronger and more courageous and more hard working than a mom could ever dream. And happy. She really will be happy. 

I would tell her that Leah WILL sleep through the night again. I promise. 

I'd tell her the support and love her family will receive will often be overwhelming and will almost always leave her breathless. This time, in a very good way. 

I would tell her she will make mistakes and fall asleep on a tear-stained pillow more often than not. But the good days will slowly start to outnumber the bad. And the tiny, broken pieces shattered all over that kitchen floor will, eventually, start to put themselves back together. And it will be okay. 

That's what I would tell her. 

I can't help but think what 2019 Maren would tell me now. She could tell me about the challenges the next 5 years will hold, because I have no doubt there will be challenges. But she could also tell me about the progress in clinical trials and technology. And everything that led to 6th grade Leah. She could tell me about big milestones and the little things that would only be noticeable or important to a mother. Because I have no doubt there will be plenty of those too. 

In the meantime, we'll experience the big milestones and little leaps as they come, because we're on this path together. 

Happy Diagnosis Day, Miss Leah. 

perfectly enough

Last night, Leah came in to my room and quietly rustled me awake.

“Mom,” she said, “I had a bad dream.”

I gently lifted her onto my bed, and for the next few minutes, we sat in the dark room lit only by the dim light of the street lamp outside, and she told me all about it. I reassured her that everything would be okay and then, after a few more minutes, we tip-toed, hand in hand, back to her bedroom where she nestled comfortably back into her bed.

And then I woke up.

I have dreams like this every so often. The details of each dream are different – the scenery, situation and topics of conversation change – but in each dream, Leah talks.

I wake from the dreams conflicted. Initially, I’m at peace; so grateful for a glimpse of normalcy with Leah, even if it isn’t real. And then, I’m usually sad. Sad for the chats that, logistically, we just can’t have. Sad for all the conversations that will never be. Sad for the fears and the frustrations she will never be able to convey, as well as the happy and hilarious moments.

I’m torn because I do my best to just accept Leah the way she is, and I feel like, most of the time, I do a pretty good job. Yet part of me continues to mourn the person she will never be. Which is completely ridiculous because the person she is is enough.

Perfectly enough.

For now, I’ll cherish the little girl she is during the day and treasure the late night chats with the one that visits me in my dreams. 

tiny dancer

This tiny little dancer waited patiently for years for the day a special needs dance class was offered in an area where we lived. 

Today was that day. 

A few weeks back I got an email from a local source for respite care and activities for special needs children. They were, for the first time ever, joining with Ballet Quad Cities and offering a dance class for special needs kids. That is, for kids 8 years and older. I emailed back to show my enthusiasm for such a class and mentioned if they decided to continue the class and offer it in the spring after Leah turned 8, we were definitely interested. She emailed back and said she had spoken with the instructor and would be happy to have Leah an another 7 year old join the class! 

Leah went to the first class last week and loved it. And we both agreed a leotard and tutu were musts. So shopping we went. She picked out her entire outfit and I think she looks stunning! The class runs for six weeks and hopefully they will do it again in the spring! 

My heart feels as happy as this tiny dancer's face. 

Help us NOT SPEAK for Rett syndrome

I'd give almost anything to hear my sweet little Leah's voice again. The little voice that once told me her favorite fruit was an "appie" or that she wanted more "cheese peese." The tiny voice that mixed up trickier words like "opatus" for Octopus. 

The voice that was never able to mutter that she loved me before it was taken away. 

I'd love to hear the silly thoughts running through her head each day. Her fears or joys from the first day of school. Her thoughts on living in -40 degrees last winter. What a seizure feels like. Her best friend. Her favorite activity. Her thoughts about the biggest and smallest events in her life. I'd love to hear it all. 

But I can't. 

So yes, I'd give almost anything. I'd absolutely give up speaking for an hour to spread awareness of Rett syndrome and the hope that current clinical trials are providing RIGHT NOW. 

Would you do the same? If you'd give up speaking for just an hour, join with Leah's little sister, the newest spokes sibling for the Rettland Foundation, in donating just $10 for your not speaking kit. And then find a friend or two, head out into your community and spread the word - without a spoken word - about Rett. 

To Follow Rettland Foundation on Facebook, click: https://www.facebook.com/rettlandfoundation

To Follow on Instagram: @rettland

the Fosters in farm country

After having such a great time with the Fosters in IL, we all decided they should come check out our neck of the woods. The plan was to have them come see some of the John Deere sights and then we'd all go to Tug Fest, which was perfect since they are from IL and we are from IA. May the best state win, right? 

Well, Leah had other ideas and decided that after a 20-month hiatus, she should start to have seizures again. Luckily, the Fosters totally understand living with Rett syndrome and they just rolled with it, seizures, sleepiness and all.

We bagged Tug Fest (next year!!!) and instead had a quick lunch and then paid a low-key visit to the John Deere headquarters where... 

John and Ava thought the equipment was comfy enough to take a snooze in,

we learned that even though Kate has done a lot of growing lately, she is, in fact, still small, 

and we let two two year olds drive a combine. 

After our Deere shenanigans, we turned on the hose in the backyard and the girls had a great time running through sprinklers and splashing each other in the pool before eating homemade pizzas to recharge them. 

It was short and sweet, but so much fun to spend a relatively low-key day with some pretty fabulous company. And at least John had a guy to hang out with this time! 

Come back to Iowa soon, Fosters! We can't promise seizure-free activities, apparently, but we can promise a good time. (And it was probably good that we didn't go to Tug Fest this year - I heard IL won.)

]

the 'burbs for a day

When you have a wide open weekend in the middle of the summer, and your husband is on another continent for three weeks, and you know you need to keep yourself and your girls busy, and you have Rett friends who live in a suburb of Chicago and are willing to let you hang out with them for a day, you go. You just do. 

First, you stop at IKEA to grab some supplies for a few home improvement projects. And you eat meatballs for dinner. 

Then, you blow up a mattress and sleep in their playroom with your girls. And you wake up to a house full of squealing and giggling and even more girls. (Poor John.)

Then you head to their village's summer block party that has live entertainment and darling tiny carnival rides. You let your 2 year old ride all the rides (while you die, figuratively, of cuteness). 

You let your 7 year old run wild on the grass, and then rest in the stroller (the stroller that is waaaaaay too small for her, but you're trying to figure out how to afford the $1,500 one she needs). 

And you let a few things slide because, well, 2 year olds can't read. 

You feel so incredibly welcome and normal, even, in their company. Because even though you have amazing friends from all walks of life, sometimes it's just plain nice to be with another family who deals with what you deal with on a daily basis. 

After a day filled with fun (and sun and humidity), you pile back in the car and wave goodbye. Not because you want to. But because you have to hit up Trader Joe's on the way back home. 

And while you're at Trader Joe's you realize your 7 year old is also riding in a cart that is waaaaaay to small for her and you wonder when, exactly, she grew. 

But you're still glad you went because you get to munch on delicious food on the way home AND the kind employees give your two year old stickers that will entertain her for an hour until she falls asleep. 

And then, when you get home, you immediately check your calendar to see when you can do it all again. 

Laytons ladies in Louisville

The Layton ladies took a weekend road trip to Louisville, KY (a new state for all three of us!) to visit my long-lost cousin, Bratny. (For the record, her real name is Brittany, but when we were younger we called each other Moron and Bratny, and I just can't stop.) Bratny's husband goes to the Louisville School of Dentistry and I had never met her kids (ages 4.5 and 2)...it's been that long.  

As it turned out, my sister Kelli was visiting Louisville for her a gymnastics competition her niece was in, so I planned my visit at the same time. She was with her darling mother in law, another niece, her daughter Mackenzie, and her youngest son Nolan. I did miss the other boys, but was so excited to see at least part of her family after more than a year. 

Leah had just finished camp the day before, so I woke at 4:30 Saturday morning to pack the last minute items in the car and transfer my sleeping beauties to their car seats. My goal was to make it to Louisville by noon while the girls slept for most of the morning. 

Well, they were wide awake after I transferred them and then slept for only about 20 minutes (pictured below) the entire drive, but were still fabulous travelers. And construction on what should have been our last hour made it our last nearly three hours. We arrived at Bratny's around 2pm. 

First things first, they jumped right onto the tramp (no pun intended), while I unloaded a few things out of the car. 

Leah had a mini meltdown, so after we got her all settled, we headed to the zoo...which happened to be right across the street. Seriously. Right across the street. And not even a big, busy street. A tiny residential street. It was perfect. 

The girls had a fabulous time at the zoo, going on the "up down up down" (most people call it a carousel). I decided Leah might be a descendant of the giraffe. And we found Kate-a-potamus's namesake, the hippo. Kate and Blakely, Bratny's daughter, are two months apart in age and were so cute together. We heard "Mine!" "No Mine!" more times than I'd care to admit, but it really was fun to see them play. 

After a few fun-filled hours, we headed back across the street for dinner and then goodbyes to Kelli and company as they were headed back to Tucson early the next morning. A short but sweet visit. (And please pay no attention to my unkempt self...waking up at 4:30 and driving for almost nine hours doesn't bode well for me, apparently.)

Sunday we went to church together and mostly just relaxed. It was nice to spend the weekend with family rather than alone with the girls at home! 

Monday morning we headed to see the U of L School of Dentistry, which also happens to be Grandpa Hauley's alma mater. The girls made sure to find his picture in the hallway of past graduates. It was fun to get a sneak peak of the training they receive. 

We then headed to Calypso Cove, the YMCA waterpark in the area. Seriously, it was the most amazing Y I have ever seen! I'm definitely submitting a comment card to my local Y. We need this in Iowa! 

After swimming, I was so excited to go and visit with Ann Marie, who I first met on the Rett mom getaway I attended in 2010. I hadn't seen Ann Marie since, and I had never met her daughter, Abby, who always reminded me so much of Leah. They live about 10 minutes from my cousin and Ann Marie was so nice to let us come visit even though she had a one month old baby! It was so much fun to catch up, meet her husband, Abby and their two boys, and just watch Abby and Leah together. Their 5 year old son and Kate played like best buddies for two hours! It was such a fun afternoon. 

My plan was to leave late afternoon on Monday to make it back that night, but Bratny talked me into staying. So I put the girls down for bed and watched the Bachelorette finale with Bratny and some of her friends and then headed out the next morning. 

It was a whirlwind of a trip, but so much fun. We definitely can't go another five years before another Moron-Bratny reunion. 

Camp Hand in Hand

For the last several months, Leah has participated in a respite program through a local agency called Hand in Hand. Volunteers come to pick her up for movie nights, dinners, or even playing at the park. It is intended to give respite to primary care providers, but honestly, I think it's more respite for Leah! Sometimes a break from boring old mom and hanging out with a cute college girl instead is just the ticket. 

Hand in Hand offers a week long day camp each summer (held at YMCA Camp Abe Lincoln) and, after a bit of thought and discussing it with Leah, we decided we'd give it a try. 

So, we lathered on the sunscreen and packed her back pack with swimsuits, towels, horse riding pants, snacks and more and sent her on her way!

In four words, Leah was a fan. 

In a few more than four words, Leah was a really, really, really BIG fan. 

She had two volunteers that switched off days with her and she really loved them both.

The camp ran all day long for five consecutive days and included swimming, horseback riding, crafts, music therapy, archery, water fights and typical camp activities like cooking s'mores around a campfire. Each year the camp has a different theme. This year it was a fiesta and Leah was on team Chihuahua. 

There is probably nothing in this world that could make a child feel more typical than going to summer camp and I'm so glad such an amazing camp exists to give Leah that opportunity. 

I thought she would come home exhausted each night, but after a brief nap on the bus, she was excited and ready to go again! They couldn't have asked for better weather the entire week. Mr. Polar Vortex that decided to make our winter nearly unbearable, actually came in handy providing a pleasant summer. 

Thursday night they held a family cook-out where they gave awards and tshirts to all the campers and presented a slide show of all the fun things they had done all week. Kate and I were excited to see what Leah had been up to! 

Any hesitations I had about sending Leah off to this camp were thrown right out the window and I think it's number one on our list of things to do next summer!