Thursday, October 31, 2013

october in an instant

October has always been one of my favorites, and this year was no different. It was stuffed full of what will be good memories for years to come. 

I was a little emotionally exhausted this year for a few different reasons, but the goodness that surrounded me all month long was enough to make up for the low days and buoy me up for more days to come. 

I look at these pictures and am reassured that my life is blessed with beauty, family, friends, laughter, love and more. 

Thank you, October.

a super halloween

This year, we again gave Leah the choice of what she wanted to be for Halloween. After a number of options, she wholeheartedly agreed that a superhero would do the trick. Since Kate isn't old enough to choose, we all donned our spandex and tied on our capes to save the world together. 

Wonder Woman was a fabulous trick or treater. She didn't mind that half the neighborhood had their lights off and didn't participate. The ones who welcomed us were incredibly kind. And the rain was no deterrent. She braved the cold air and wet sidewalks and filled her bag wonderfully full (well, kind of wonderfully full). 

Meanwhile, back home, Super Girl was busy snitching candy from the bucket. 

After we saved the world, we carried on my childhood tradition and sat down to a warm dinner baked in a pumpkin. 

I'd say Leah's choice was super indeed. This is the best picture we got of our littlest super heroes. Mostly because of Kate and her facial antics. It's like she's not even my child!
Happy Halloween!

Purple Piggies

If piggies painted purple could cure Rett syndrome, we would have done it this month. All 651 toes (and one thumb) strong. 

Leah giggled and her grin stretched wide each time I got a text, tag or email. She loved it! Thank you so much to everyone who took the time to spread awareness and share our month with us! It really means the world. 

a kindergarten halloween

I headed to Leah's school this afternoon for their school parade and her classroom party. (Miss Kate was able to take a nap at a fabulous friend's house!)

The kids in her class were so darling all dressed up. And they were also darling with Leah. And not in a Leah-is-a-class-pet kind of way. But rather in a Leah-is-our-real-friend kind of way, which is awesome. (Especially Miss M, who wanted "just one more picture with Leah.")

My camera didn't focus as Leah walked by in the parade, but rest assured she was cute. 

After the parade, the class made ghost pops (and Leah's friend A decided hers were twins, a boy and a girl named Mary and Jerry, of course) and then played "ghost tap" (more commonly  known as Heads Up Seven Up in my generation). 

This is Wonder Woman with her fabulous special ed teacher, who came as Jessie from Toy Story, which just happened to be Leah's second choice costume. Perfect. 

And this is Wonder Woman's afternoon aide, who was simply fantastic with her. 

It was kind of a perfect afternoon, and much needed after the week we've had. It's always so reassuring to see her in school, thriving. Wonderful, in fact.

Wednesday, October 30, 2013

diagnosis day take 4

Today marks 4 years since we received that dreaded phone call confirming Leah's diagnosis of Rett syndrome. The phone call that changed the entire trajectory of our lives. And while I cannot say I'm glad we got that phone call, I can say I'm glad to see, four years later, where it has led us. The people we have met, the lessons we have learned, the lives Leah has changed for the better.

Life with Rett syndrome is rough. Period. It's rough if you have it, it's rough if you live with someone who has it. But, four years later, I can say I feel much less lonely than I did that Friday afternoon, sobbing all alone on my kitchen floor.

In the last four years, we have amassed an army of people who care. People who have given their time, talents, energy, money, and love for one little girl. Family, friends, acquaintances, teachers, therapists and even strangers. We have been welcomed with open arms to a new family, our Rett syndrome family, who picked up our crumbled pieces and put us back together. And now we are the ones welcoming fragile families to the fold.

Most days, I see people in a very different light than I used to. I'm not afraid of a child who is different. I feel a connection to a grieving mother. I try to give the benefit of the doubt to someone who has wronged me. I have so much gratitude for individuals who have seen a need and stepped in to help. I have been humbled daily by the sacrifices made by others for our family's benefit.

Every year, I promise myself that today will just be another day, but I always end up thinking so much about that particular day and its events, and the few months leading up to it and I seem to grieve all over again.

I know we are blessed to have Leah in our lives, but four years ago we officially lost parts of her and had to bury a lot of dreams.

And this year, for the first time, Leah has shown us her own grief over her diagnosis. She has shown us sadness and anger and even a bit of fear. That could be partly due to Kate and her daily developments and achievements. It could be because Leah is getting older and truly seeing everything other children can do that she can't. I'm not sure. But either way, she feels it, and some days I just don't know what to do about it. 

Leah has taught us more than I could ever have imagined about strength and love, forgiveness and courage, faith and work, joy and sorrow. 

So much joy and sorrow. So much joy that sometimes I can't contain myself and I smile on the outside and in. But so much sorrow that sometimes I find myself unable to even breathe. 

But you always do. You stand back up. You take a breath. You wipe a tear. You give a hug. And you move on. And you do it with your amazing army. (And your amazing miss ribbons.) And then you try and do the same for others who are crumpled on their own kitchen floors, phone in hand, today. Because their lives will change. Drastically. The new path might be rough and rocky and dirty and dark. But you'll see amazing things along the way that you would never have otherwise seen; and in the end, it leads you exactly where you need to go.

Sunday, October 27, 2013

Primary Program

Today was the much-anticipated Primary Program in church. I have always dreamed of the day when my children would participate in the program for the entire congregation. I wondered if they would sing their hearts out, wave innocently at me from the stand, say their parts with confidence, etc. 

It has been interesting to say the least to watch Leah be a part of the annual program for the last three years. My heart swells knowing she is able to participate at all. But a little part of me aches knowing she can't do it alone and possibly not in the way she would like. 

I like to think she is singing the songs in her head. I'm certain she loves the music and we listen to the songs a lot, so I'm confident she knows them. 

I also hope we do a good job helping her create her speaking part. Each year, she has been given a prompt she is to finish with her own thoughts (just like all the other children). I do a lot of yes/no questioning to figure out what she wants to say. 

This year, Leah used her switch beautifully to communicate these words about our prophet:

The prophet teaches us... serve others and treat everyone we meet with kindness.

I'm so blessed to have Miss Leah in my life. Knowing how much service and kindness have been shown on our behalf, I can only hope that our family follows the prophet's words and Leah's example in doing the same. 

Here are a few shots of our little Leah on her big day. I had to document since she is growing like a weed and this is the last time she will be wearing my favorite Annie dress, showing off her fabulous knobby knees (something I wish I had!!). 

Saturday, October 26, 2013

Trunk or Treat

Tonight the Super Laytons attended our church's annual chili and corn bread cook-off (and my cornbread was amazing, if I do say so myself), carnival and Halloween trunk or treat.

Wonder Woman loved the games (she dominated the cake walk) and trick or treating at everyone's trunk.

Super Girl was my accomplice and was seriously super at handing out candy to everyone who passed by. She also tried her hand at trick or treating for the first time ever. She was generous in the taking, to say the least. BUT, she was also generous in her giving, so it balances out??

A super time was had by all!

(Also, please note that Ryan dressed up this year. This a superhuman feat accomplished by me in and of itself.)  

Miss Melia

Today I had the opportunity to run a 5k for a darling little friend of mine named Melia. I was blessed to meet Miss Melia and her mom at the IRSF conference back in June this year.  

You see, Melia has Rett syndrome just like Leah and her brilliant mom set up a 5k run for Rett syndrome awareness month. But the brilliant thing about this run was that anyone could run, walk, crawl it from ANYWHERE. You just had to do it during the month of October. 

Melia and her family did their run in Canada, where they live. I did mine in Iowa. And lots of others ran in lots of other parts of the world.

But we all ran for Miss Melia. We all ran for Rett syndrome. 

And, as an added bonus, when trying to find a good 5k route, I decided to venture onto a new trail (so far I have only run on the path that parallels the streets here) and I was richly rewarded. It was a beautiful path surrounded by lush, color-changing vegetation (and corn fields too!) that made me feel like I was on my old trails in  California and New Hampshire. I will definitely be revisiting it soon. 

Thanks for the run, Miss Melia, and thanks for being an inspiration and the cutest little friend!

Friday, October 25, 2013

iowa is confused

Iowa was confused this week. On Tuesday, I got in the car and the radio weatherman (is that his name?) said there would be flurries north of I-80, but those living south of I-80 (me), would just see some rain. 

An hour later, as we finished up an errand, we saw flurries. Snow flurries. 

Then Kate and I went to a music class and an hour later when we came back outside, the flurries looked like this. 

And then, two days later, the flurries looked like this. 

I think Iowa is confused.

Tuesday, October 22, 2013

Purple Piggy Collage

In Octobers past, I've really gone all-out for Rett syndrome awareness. This year, I just didn't have it in me. And you know what? That's fine. I'm learning to say no and give on things that can give. I'm sure there will be years when I have endless amounts of energy and years where I need to dip into my reserves. 

This was a dipping-into-my-reserves kind of October. 

Lucky for me, I found a way to support my miss ribbons AND relax at the same time: by painting our piggies purple. 

This is one tradition we have done every year since 2009 and I plan to keep it up for many years to come. Leah even used "purple polish" as her secret letter P object in school last week. We recorded clues onto her switch that she shared with her class to guess what she brought.

As part of the recorded message, she invited anyone who wanted to paint their piggies purple along with her. So, I'm doing the same. 

I know there's only 10 days left in October, but let's see how many people we can get to paint their piggies purple for Leah and her friends. 

If you send me a picture (email -, text, tag me in instagram! - marejl), we'll gather them all together for Leah's Purple Piggie Collage. (It's fun to paint, but it's even more fun to take a picture when you're done!)

Purple Piggies for Rett Syndrome! Who's with me!?

Saturday, October 19, 2013

red barn pumpkin farm

We spent a glorious Saturday morning today with some friends at the Red Barn Pumpkin Farm about 40 minutes from our house. Somehow I have no pictures of said friends, but I promise they were there! We couldn't have asked for better jacket weather or a more perfect (and free) farm to fill our fall needs!

Kate tried and tried to get that orange tractor to work. Then she realized the problem was the color. 
 Much better success with the green ones!

 We enjoyed the golden views. 
 And the orange pumpkins.
 And more golden views.
 And more orange pumpkins.
 We played games.

And measured ourselves against the scarecrows (apparently there was something very interesting on the ground?).

We played in the corn crib (and one or two kernels home in our shoes).
 And we walked through the corn path and the hay maze.
And then we picked out some fresh corn kernels for popping and some Indian corn for decoration. A perfect way to spend a perfect fall morning.

Wednesday, October 9, 2013

super powers

October brings a lot of things to our house. A lot of fun, wonderful, beautiful things. But in 2009, it brought something that hadn't previously crossed our minds: Rett Syndrome Awareness Month. 

And because it's Rett Syndrome Awareness Month, our lives tend to be overwhelmed (usually in a good, positive way) with all things purple and Rett. Events are held, monies are raised and new friendships and connections are often formed. All good things!

Our focus, all month, is amazing individuals fighting the Rett syndrome fight every day. As well it should be. 

But, hanging in the shadows are some pretty amazing sidekicks that I can't help but notice are pretty influential in spreading the awareness we tout so much all month. 

They watch the seizures, endure the appointments and therapies, help with the feedings and learn the language spoken only with eyes. And then they share Rett syndrome with their friends, classmates, teachers and teams. And they do it from the moment they wake up until their heads rest on their pillows again at night.

They are siblings. And they are superheroes. 

In the words of one of my favorite sibling superheroes, Chloe, "I have super powers. I'm a Rett syndrome changing girl."

With every word spoken, penny fundraised, chin wiped, step taken, hand held or hug given with, to or for their sisters, they really are changing the world. 

Young siblings learn patience, kindness and understanding and then teach these traits to the people in their own worlds every day. Grown siblings have become doctors, scientists, therapists and advocates literally changing the lives and futures of many girls and women. And in addition to growing awareness, funding or performing research and improving perceptions of the world, they are changing the worlds of their sisters, making them more pleasant places to be. They are their sisters' voices, hands, number one fans. They are their legs, their hearts, their friends. And if someone doesn't have an actual sibling to call their own, they are immediately taken in by an extended family full of them. 

I love and admire Leah. And Claire, Avery, Henslee, Melia, Katie, Cristia Isabel, Emilia, Jillian, Samantha, Sorel, Lucy and more, more than words can express. 

But I also love and admire  Chloe, Nolan, Nixon, Owen, Abby, Melissa, Ava, Olivia, Griffin, Collin, Xander, Fischer, and Mason more than words can express. And I really, really love Kate. I love her for things she already understands and accepts and for a lifetime of those to come.

I love them for spreading awareness, painting their toenails purple, being helping hands. I love them for serving as sidekicks when Rett sydrome periodically takes the forefront and everything else is forgotten, and for being full blown superheroes every single day. 

One by one, they are Rett syndrome changing girls and boys with incredible super powers. In October and every month of the year.