Monday, April 27, 2015

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? 

Sunday, March 1, 2015

february in an instant

February brings a chill to my bone, literally. 

Iowa sure knows how to do winter. With a high of 42 for the month (not accounting for wind chill - I can assure you it felt like 42 exactly one day of the entire month and we spent it playing outside) and a low of -19 (still not accounting for wind chill - I can also assure you it felt much colder than -19 at many points during the month), and 15+ inches of snow (I know, we've got nothing on Boston in that department, but the WIND, I tell ya), it was miserable, on most days, to go outside. 

My front entryway was a snowy, salty mess of coats, boots, hats, mittens and scarves. There were tissues scattered throughout the house every single day. And Ryan happened to be out of town (in very warm places) during each major snow storm. With the exception of one fabulous friend on a particularly snowy Sunday morning, I single-handedly kept our driveway and walks shoveled (and burned a lot of calories doing it!).  

Luckily our time inside was well spent celebrating birthdays, valentining, reading good books, exercising, snuggling up to movies and eating yummy food to keep us sane. And we had one picture-perfect snow day that we spent sledding in our backyard with friends. 

Some good times were had, but I'm ready to put this chilly February in the books. 

Saturday, February 28, 2015

On being selfish...

About a month ago, my husband asked me, “So, do you still blog?”

It was an innocent question. At the time, my last post was three months prior. Lots had happened in the three months since I had written anything down on my beloved blog. Lots that I would, normally, post about.

“Yes,” I answered him. “I just needed a break.”

He didn’t probe any further, my answer was sufficient for him. But I continued to think about it. And the why behind my simple answer.  I love to write. I love to record my family’s history. I love to sort out my thoughts and emotions not by speaking, but by using those 26 familiar letters.

But it was true, I did need a break. More than that, I needed to be selfish.

Last October I was not in a good place. I was tired. And grumpy. And sad. And overwhelmed. And feeling inadequate. And lonely. And just not enough.

I can’t pinpoint one single reason, but I could give you a list of one thing after another that slowly but surely began to bring me down. One negative thought led to another, and again to another, and another. Things that shouldn’t normally matter weighed upon my shoulders.

I wasn’t as good as this person. I wasn’t as capable as that person. I wasn’t as patient as her. I wasn’t as knowledgeable as him. I wasn’t as fit as I used to be. And I just wasn’t feeling like ME.

So I took a step back and made a decision to be selfish. To focus on myself. To not wallow in my own misery, whether it was real or imaginary. To live by the words of Gordon B. Hinckley, when he said, 
Respect yourself. Do not feel sorry for yourself. Do not dwell on unkind things others may say about you [and I would add or that you may say about yourself]. Polish and refine whatever talents the Lord has given you. Go forward in life with a twinkle in your eye and a smile on your face, but with great and strong purpose in your heart.
I had plenty going for me. I have a handsome, loving, hard working husband. I have two beautiful, strong, courageous daughters. I live in a safe, friendly (albeit cold) community. My daughter goes to a wonderful school where she gets great support. I have a warm house. A working car. If I budget correctly, I have plenty of money each month for the things I need. And despite my destructive thoughts, I was a good, capable, patient, knowledgeable, fit person. But I just felt like I was drifting.

So I let go of some extra things in my life. Some permanently (hopefully). Others just for a time. And I focused on me.

I continued to write, but just for me. With my little pen (PaperMate Flair, medium tip, if you were wondering). In my little notebook.

I joined a fitness challenge where, over the course of 8 weeks, I lost more than 15 pounds (most of which I had gained during my poor-me phase) and gained a lot of strength and confidence. I came in thirteenth place out of 126. (I have to mention that the top 12 got a monetary prize, so I kind of felt like I came in fourth in the Olympics, but that’s a story for another day.)

I worked on a few other personal goals. I checked in on myself daily and weekly. And sometimes hourly. And I improved.

I steadily climbed out of my pit. And hopefully I carried out others I had pulled down with me a few months before. The climb wasn’t easy. Sometimes it hurt. And even though I feel like I’m out of that particular pit, I’m sure there are rocky paths and mud pits and debris on the path ahead. But taking the time to refocus and take care of myself was just what I needed to give me the strength and confidence to continue to carry myself and my two littles up and over and around the mess. And to see the beautiful scenery on the way, which was something I was completely missing.

In the end, being selfish actually helped me to be more aware and more in tune and more selfless for those I need to focus on.

So yes, I still blog. I took a break. To be selfish.

And now, I’m back. 

*I will be filling in some of the gaps from the last few months, simply for my own benefit (hmmm...selfish) and they will be postdated. 

Saturday, January 31, 2015

January in an instant

This January I did my best to just love January. I do love new beginnings, but I also love green grass and flowers, sunshine and warmth. 

And since January in Iowa has none of those things, I tried my very best to enjoy what January in Iowa does have: cold, wind and snow. We embraced the snow and boots and mittens and coats and below zero temperatures. We got out and played and discovered and experienced as much as we could without getting frostbite. And I enjoyed it. We tried to make the inside stuff fun too. And I enjoyed it. 

Well, almost all of it. 

I still don't like the wind. 

Wednesday, December 31, 2014

december in an instant

It's hard to not just love December and all that it stands for and brings. A time to give, to worship, to love. A time to reflect on the past year and look forward to the new. A time to be with family. A time to rejoice and sing. 

I love blasting Christmas music all day long (I do it sometimes in June, but it's not as universally accepted then). I love opening my mailbox every day (and opening more than just utility bills). I love sitting on the couch at the day's end in the glow of twinkling tree lights. 

Fall is still my favorite, but I'm really glad it's followed by December. 

Sunday, November 30, 2014

november in an instant

"How wonderful it would be if we could help our children and grandchildren to learn thanksgiving at an early age. Thanksgiving opens the doors. It changes a child's personality. A child is resentful, negative - or thankful. Thankful children want to give, they radiate happiness, they draw people."
-Sir John Templeton

I am thankful for November. I am thankful for husbands and daughters and leaves and church and friends and piano and food and flowers and family and school...and pumpkin pie. 

I am thankful for November. 

Sunday, November 2, 2014

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. 

Saturday, November 1, 2014

october in an instant

"I'm so glad I live in a world where there are Octobers."
-L.M. Montgomery, Anne of Green Gables

That about sums it up. 

Friday, October 31, 2014

Halloween in a pumpkin-shell

As a whole, I have mixed feelings about Halloween. The world is turning into such a tricky place, it's hard to love a holiday where I have to worry about my kids being drugged by candy given to them by someone living on our street. And, if the candy is legit, it's hard to ration the candy for my kids and resist it for myself! But, one thing I really love is creating costumes for my family. 

We did the run-of-the-mill (at least in the Layton household) eye guessing game for costumes this year. Leah gave us plenty of "no" answers. But when I suggested pirate, she stared me right in the face, as if to say, "aye." So, the three elder Laytons dressed as a pirate clan, and, as everyone knows, every good pirate clan needs a colorful parrot to, well, parrot every thing they say. And we have one of those living with us, she just didn't have feathers yet! 

So, I set to work making a tattered skirt for our youngest pirate lass, with a sash made from her golden treasure. And we gave our parrot feathers. The only problem is, our parrot talks, but does not sit still on a perch like a parrot should, so we had to trace her body on a piece of paper to get an accurate measurement for wings. 

We debuted our costumes at the annual church trunk or treat (which we rushed to directly from family pictures, hence Kate's fancy attire) the Saturday before Halloween. Kate also took her candy-passing-out obligations very seriously. And I seriously failed at my attempt to give a pirate-looking "aaaaaargh" face with Leah. You can't win 'em all. 

Leah's school had a fabulous parade and her class held a fun party. Leah's costume was, apparently, the big school secret. She refused to answer any questions about her costume (she giggled with closed eyes every time someone asked about it) and everyone was dying to know what she was going to be (we're talking classmates, teachers, kids from other grades, the nurse, the dean, everyone)! I was a celebrity as I walked in with her pirate clothes in my bag, and the whole class was squealing with excitement as her costume was revealed. I'm pretty sure Leah didn't mind the extra attention. Speaking of extra attention, Kate got some of that too...and she minded. 

The school day events tuckered Leah right out, so she took a power nap before we ate dinner and headed out for the evening. 

For actual trick or treating, we set out a bowl of candy at our door (with the perfect amount of candy, apparently) and headed to a friend's neighborhood where a fabulous 13-year-old daughter of our friends took her two little brothers along with Leah and Kate trick or treating with a few of her friends. Ryan and I got to stay inside with her parents (where it was warm) and drink Hungarian hot chocolate. Pretty sure I could get used to that!

At the end of the day (or week) of celebrating, there are no mixed feelings here! A happy Halloween season all around.   

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!