may in an instant

Twelve.
Tucson. 
Tulips. 
Tornadoes. 
Three. 

May had a little bit of everything. Most of it good. 

april in an instant

Growing up, I was never one to appreciate the spring. I couldn't understand why some people chose it as their favorite season. After living through another Winter That Shall Not Be Named, I completely understand. Spring, and April in particular brings new life. Hope. Rebirth. Joy. Warmth. We celebrated the birth of our Savior. We enjoyed time with friends...outside! And we marveled at the beauty...and warmth...of God's creations in spring. 

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? 

march in an instant

March was a month of traveling - Ryan traveled, I traveled, we all traveled. I traveled south to warmth, he traveled waaaaaay south to even more warmth, and we all traveled north to...not warmth. But if an inability to decide whether its hot or cold doesn't define March in Iowa, I'm not sure what does. 

spring break in mis-wok-ee

It wasn't until about two weeks before spring break that I realized Leah had a neurology appointment in Chicago smack in the middle of our free time during the break. With me getting home from Salt Lake on Tuesday, we only had the end of the week to play...and her appointment was on Friday afternoon. These aren't just appointments you can reschedule - unless you're okay waiting six months. And we're not. I was a little bummed seeing as we wanted to go somewhere new (Chicago is lots of fun, but we've done it a few times and wanted to explore!). Ryan suggested Milwaukee and I wasn't over the moon about it, but figured it was better than nothing. Just a short drive north of Chicago, it was the best option for the amount of time we had given her appointment. 

We arrived a little later than we would have liked, but still took some time to explore the area near our hotel. We ran into the Fonz and Leah loved the elevators they had for her stroller on the river walk. Kate apparently had a rough day and relaxed by drinking a late night glass of water from a wine glass. 

The next day we explored Discovery World - an innovation, science and technology museum with hands-on exhibits. It had a music factory, an aquarium, an enormous exhibit of the Great Lakes and surrounding regions, a Les Paul exhibit and so much more. We spent hours exploring inside and out with a great, windy view of Lake Michigan...where we got a perfect family photo. (And, thanks to the reciprocal pass from our local museum, it was FREE!) 

That night, we walked over to the Milwaukee Public Market to eat. It was a hoppin' (read: crowded, notably so with a large special needs stroller) place to be on a Saturday night, but lots of fun. We ate some great food and bought some local popcorn to take home. We spent the night in watching a movie as a family. 

The next morning, we decided to hit up the Harley Davidson Museum on the way out of town. It was incredible! SO many Harleys from the first one produced in 1903 to current day. I loved the Harleys through history - especially the wartime effort, the wall of engine covers and, of course, all of the posters and ads. i can only dream of designing that well. We learned all about engines and tires and so much more. And we learned Kate was born to be wild. 

What a fun, quick weekend getaway with our girls to (ask Kate calls it) Miswaukee. It's fun to explore new places and learn new things!

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. 

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. 

To remember...

Nothing extraordinary here. Just a moment I want to remember. She might be reading Little Miss Naughty (and that might be a book she can relate to well at times), but I always want to remember her still chubby cheeks and fingers, her tiny little toes, her stick-straight hair, how much she loves her red blanket and ugly pink bear. Some days can crawl by and she knows how to push my buttons, but she brings light and joy and life to my days and I'm ever so grateful for her. 

Especially during naptime. 

Eight is Great

Eight years ago, this little one surprised us with her arrival a few weeks early. In the eight years since, she has continued to surprise us...and teach us...and humble us...and stretch us...and make our whole world simultaneously crumble to pieces and burst with joy. She is happiness and strength and courage and perseverance and love personified. Happiest of eighth birthdays to our little Leah-licious. 

Kate and I surprised her for lunch at school on Friday. We brought Wendy's (including TWO hamburgers for Leah, which she devoured in no time).  

She was spoiled with presents, but I think her favorites were her horse socks and the card from the Oakes family with 8 things they love about her. 

She loved her 8 cake - and blew out the candles all on her own. There are positives to her heavy breathing, I guess!?! We celebrated with cake and ice cream with our Iowa favorite - the Oakes family!

And one of my favorite things is on their birthdays, kids at Leah's school can pick a book to donate to the school library. Then, once it's all barcoded and in the system, the birthday girl or boy gets to be the very first person to check it out and they get their name in the front. Leah's was a perfect fit and it made us all so happy to read it! 

Pajama Party

Eight good friends filled our house today to celebrate our sweet eight year old. 

They wore their pajamas, made cereal necklaces, decorated pillow cases, tied simple fleece blankets, opened presents, played Pin the PJs on Leah, ate pancakes and donuts (little sister wasn't allowed at the big table) and doted upon Leah like you would not believe. These are good girls with good hearts and they're good for my heart. I'm so glad they could all come and celebrate our eight year old. 

Based on her giant grin we couldn't wipe off if we tried, I think the birthday girl had a great time.

Now I need a nap!