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. 

Tuesday, December 30, 2014


We decided to take advantage of Ryan's time off after Christmas and spend a few days exploring more of Chicago. We usually go for doctor appointments, so it was fun to have nothing on our agenda. 

While not quite as cold as last December's jaunt to the windy city, it was still a pretty chilly few days. The girls were troopers, especially when we walked away from the protection of the wind-blocking buildings and out to the museums around the lake. Brrrrr!

We logged plenty of steps and ate some seriously good food to more than make up for it. And I finally tried Garrett's popcorn, which is now a Chicago staple for me. We attempted Eataly, but after wandering for an hour, trying to find a place to sit with two strollers, we gave up and braved the line at Shake Shack across the street. Eataly will have to wait for an adults-only trip another time. We had a great time at the Adler Planetarium; and it was FREE because of our reciprocal pass from our local museum, which is always a bonus. We also made our obligatory stop at the Bean (where Leah was less than impressed, I guess, since she had seen it before - she fell asleep!). Kate's initial impression was not great but made for one of my favorite pictures. "But mom, I don't WANT a picture at the bean!" Sometimes two year olds are just plain fun. But she eventually came around. We also took them to the American Girl Doll store for the first time which is an experience of its own. 

The girls loved the hotel, especially Kate, who took a liking to singing "Let it Go" in the shower as loud as possible. I think Leah mostly loved the continental breakfast. 

Definitely a fun three days with my little family. 

Friday, December 26, 2014

Christmas in a nutshell

This holiday season was pretty wonderful. They just keep getting better! Kate is understanding so much more and Leah is still caught up in the magic. And with John Deere's mandatory shut down between Christmas and the new year, we have plenty of time to celebrate as a family. 

We enjoyed quiet nights in the glow of the tree lights, making yummy treats, bowling as a family, seeing the "Frozen" lights (Kate's favorite) and adorning our home with decorations old and new. My favorite decoration is still our Christmas card wall. We hung up extra ribbons in hopes we'd fill them all up this year and the love and holiday wishes that filled our mailbox each day did not disappoint. 

We participated in and enjoyed the second annual Christmas music night at our friends, the Davidsons. Such a wonderful evening spent listening to and performing so many Christmas, holiday and winter songs. I played Sleigh Ride again with my good friend Haley (we were each stand-ins for our own moms) and Kate was neither tall nor small like the rest of the snowmen, but at least she tried? 

Ryan and I got to go on a few dates, one to a local art museum for his work party. An open bar just isn't as fun when you don't drink, but it was fun to get dressed up! 

Kate was my great holiday helper this year. She helped wrap and address the gifts, made sure they were well adjusted under the tree and ensured we didn't miss a single chocolate from the advent calendar the second Ryan walked in the door from work. 

The Sunday before Christmas is always one of my favorite days. The aforementioned Haley was in charge of the program this year and did a phenomenal job. I was able to accompany the choir for a handful of pieces. I love getting dressed up in our new Christmas outfits too. When Kate saw my red tights, she decided she needed to match when we got home. 

On Christmas Adam, we had a family sleepover in the front room. I think it will be a new tradition. The girls were fans. 

Christmas Eve was filled with tradition and anticipation. We didn't get a white Christmas, but we did get a wet one. Pajamas were opened, stockings were hung (or laid out on the couch since we don't have a fireplace), treats were left for Santa and his reindeer and the Christmas story was recited. The girls giggled for about an hour before they finally fell asleep. 

Christmas morning was filled with laughter and excitement. Kate was our official gift dispenser and she took her job very seriously. Leah loved her new chair cushion and kicks and Kate loved her new-to-her crib. Little did she know it's 32 years young. I painted over my old doll crib and sewed new bedding. My favorite gift for Ryan was a Boston Marathon ornament. I spent hours scouring the internet and different stores in the area for a simple running shoe ornament, to no avail. A few days before Christmas, I decided to try once again and found a single Iowa Hawkeyes football cleat ornament. I snatched it up quick and took it home for surgery. I painted over the logo, making the black parts Boston Marathon blue (the yellow was already perfect!) and then added a Boston logo before mod podge-ing it all in place. It turned out perfectly and is a great memento of a big part of our year. 

Later in the day we had the sister missionaries over so they could talk to their families. The joy and laughter coming from our office was contagious. We then had the missionaries and two other families over for a mouth watering pot luck dinner. 

A wonderful season wrapped up by a blessed day with friends (and family from afar). 

Monday, December 15, 2014

Christmas Card 2014

Merry Christmas from our house to yours! 

(This little one thinks she's on the nice list...)

Saturday, December 13, 2014

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 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.