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? 

We believe!

Our girls had a few opportunities to meet with the man in the red suit this year and I'm confident in saying that at least one of them is a believer! 

Leah went on a school field trip to the Festival of Trees. Santa happened to be in attendance and he signed Leah's hand. She couldn't have been more pleased!

Her second run in with Santa was at a restaurant in the neighboring city of LeClaire. We brought along little sister. Leah giggled with glee as she told St. Nick what she wanted via her switch. Kate decided she likes the idea of Santa more than the real deal. 

Our church congregation had a Christmas party a few days later, giving Kate one final chance to sit on Santa's lap. We helped the girls fill out their letters (which they answered on their own...at least Kate was honest???). Leah was, once again, thrilled to meet her jolly match. Kate's visit started out a little unsure, but in the end she was a fan. Success! 

We also listened to some great music and decorated some gingerbread houses - Kate's first. She was pleased with the outcome. She was also pleased with the pieces of candy that didn't quite make it onto the house, as shown by the remains left on her face. 

Also, plaid is where it's at. 

Primary Programs and the Lion's Den

Sometimes it's small moments that make me take a step back and realize how blessed we are to have Leah as included and welcomed and accepted as she is. I know that there are many who have children with special needs who don't feel this way and I don't take her inclusion for granted. 

Leah was asked, just like all of the other children in our church congregation, to participate in the annual Primary Program. In this program, kids ages 3-11 put on an hour long meeting about a gospel topic. They gave Leah a piece of paper saying, "My favorite scripture story is [blank] because [blank]. 

Now, Ryan and I could have easily thought of a great scripture story and written it out for her. But we knew that Leah had a favorite and we owed it to her to figure out what it was and why. 

So began what I thought would be a long and tedious process of questioning. But it ended up going something like this:

Mom: Okay, Leah, we need to figure out what your favorite scripture story is. Do you have a favorite?

Leah: Yes (with eyes, of course, that is to be assumed from here on out...)

Mom: Okay, is it a story in the Book of Mormon?

Leah: No. 

Mom: The Bible?

Leah: Yes. 

Mom: Okay, is it about Noah's Ark?

Leah: No. 

Mom: Is it about Daniel in the Lion's Den?
Leah: YES. (A big, fat, resounding yes with piercing blue eyes staring me in my browns and a giggle and smile to boot.)

Mom: Great!!!

That was it! So quick. And so certain. We then proceeded to read the story from the Bible and talk about the reasons she liked it. I brought up lots of things and she let me know what she did and didn't want to include in her talk. This is what we came up with - it has full Leah approval. She presented this part in front of our entire congregation with her switch. Nice work, Leah! 

"My favorite scripture story is Daniel in the Lion's  Den. 

Daniel kept the commandment even though he could get in trouble. 

Heavenly Father sent an angel to protect Daniel from the lions. 

Daniel was a good example. 

I can follow Daniel's example by praying to Heavenly Father 

and keeping his commandments." 

It makes my heart burst to know that Leah participates so well in our church programs and that she is growing in her knowledge just like the other kids. What a powerful example she is to me! And a cute one at that. 

Activity Days Recognition

Tonight I had the opportunity to celebrate the 17 young girls I have the pleasure of working with at church. These girls, ages 8-11 work so hard throughout the year to meet requirements and participate in activities to earn their Faith in God award. They work on Learning and Living the Gospel, Serving Others, Developing Talents, memorizing scriptures and preparing themselves for the future in many different ways. 

I've been working alone in my calling for a little bit, so it was just me and the girls who put this recognition night together. They were so great! We kept it simple with some crepe paper decorations and a caramel apple bar (SO easy, and a hit!). We decided on the theme "I Am a Child of God" as it is a main part of the theme they repeat each week at their activities. The girls were in charge of prayers, the theme, music and talks. Where else could you find such a group of capable kids!? I spoke briefly about the theme and gave each of the girls their own felt crown with the initial of their name on it. 

I truly believe these wonderful girls are daughters of God and I hope they always remember that! 

President and Sister Layton

We had the incredible opportunity to be with LaMar and Lynnette as they were set apart as President and Sister Layton to serve over the Fiji Suva mission for the Church of Jesus Christ of Latter-day Saints. 

It was a small group and we had the privilege of gathering in Elder Jeffrey R. Holland's office for about 30 minutes as he counseled LaMar and Lynnette and spoke to us as a group in a very informal way. 

Elder Holland set apart Ryan's dad and Elder Lynn G. Robbins of the Presidency of the Seventy set apart Lynnette. The spirit was so strong and I really think the whole experience calmed a lot of nerves in that room! 

We decided against bringing the girls - Ryan's cute cousins watched them for us. When we were sitting in Elder Holland's office we both second guessed ourselves. It would have been amazing to have them there! Then we remembered Leah's uncontrollable outbursts, constant rocking and hand flinging, and Kate's complete inability to sit still and NOT talk (ironic, right? Our girls have opposite problems) and we stopped second guessing. 

I have a tendency to feel like if there isn't a picture of it, it didn't happen. But it did. And it was wonderful. 

We did get a group shot of everyone (minus LaMar's sister Thalene who is taking the picture) in the parking garage of the Church Office Building, where we saw Elder Perry, Elder Scott, President Eyring, Elder Cook and a few others. A great way to spend your Friday afternoon!

{L to R: Maren, Loretta Stark - Ryan's grandma, Ryan, LaMar, Lynnette, 

Jessica - Ryan's sister, Marlene and Hugh Pierce - Ryan's grandparents.} 

After the setting apart, we went to dinner together and then we bid them farewell. They left the next morning for the Missionary Training Center. 

{Leah afterward with Great Grandma and Grandpa Pierce - can't wait to get them back in Nauvoo!!}

It was a beautiful way to begin their three years of service and I can't wait to see what the next three years will hold!

My Family is Blessed...

Leah had the opportunity to give a talk in Primary (the children's group at our church) today. It might seem ironic that someone who can't physically talk would be asked to give a...talk...but we are so blessed to have volunteers in our church who are responsible for the Primary who really believe in Leah and her abilities. 

I sat down with Leah and, with her topic of "Our Families are Blessed when we Follow the Prophet," discussed possible directions for her talk. 

I am being completely honest when I say I probably helped her just as much as I would any other child. We read through a few different talks given recently by our modern-day prophet, President Thomas S. Monson. Leah picked the talk she wanted to focus on. And she was very clear about it!

She then chose each of the parts of the talk she wanted to use. She chose to include part of a song about prophets. And (after suggesting 307 choices), she gave the okay to give three personal examples that related to President Monson's talk. 

The switch she uses is relatively quiet, so it's hard to hear in a big group. So, Leah decided that she would give the intro and closing on her switch and she would let me read the rest of her talk for her. 

Ryan and his parents were all able to see her give it...and she had a few other adults in the room in tears. I really was so proud of her. She worked hard and did so well!!

Our family is blessed with Leah in our lives!

Our Families are Blessed when we Follow the Prophet

Leah Layton Primary Talk || May 4, 2014

Today I’m giving a talk about how families are blessed when they follow the prophet. My mom is going to read the talk for me. 

In the primary song, “Follow the Prophet,” the last verse tells us, “Now we have a world where people are confused. If you don’t believe it, go and watch the news. We can get direction all along our way, If we heed the prophets – follow what they say.”

 

Last month, we all had the chance to listen to our prophet, President Thomas S. Monson, speak to us in General Conference. 

On Sunday morning, he gave a talk about love. President Monson said, “Every day of our lives we are given opportunities to show love and kindness to those around us.” 

• This week at my school, we had a walk-a-thon. My friend Addi showed love to me by walking next to me the entire time. It made me feel good inside.
• I can show love to my little sister Kate by sharing my toys with her and being nice.  
• Another way we can show our love is just by smiling. Lots of people tell me they can feel my love when I smile. 

President Monson said, “May we begin now, this very day, to express love to all of God’s children.” 

I know our families can be blessed if we follow the prophet. 

I say these things in the name of Jesus Christ, Amen.