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? 

Wednesday, April 1, 2015

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.