Saturday, August 30, 2014

One Small Step

I remember it like it was yesterday. This time last year I read an online newspaper article about a local family whose daughter had Prader Willi Syndrome.  "Hmm," I thought, "never heard of it, but that sounds tricky...I bet that's hard for her parents. I wonder if she can understand what she's dealing with at such a young age. That name sounds familiar. Hmm." Although I thought about that article and that family off and on for several months, it wasn't in any sort of deep way. More like, "Wait, is it Prader Willi or Willi Prader? Maybe it was named after a guy name William." And "Lillian, that's a name I considered for my future kids when I was younger. I wonder if they call her Lily." 

They do call her Lily. Here's how I know: 

I came home every Friday for weeks telling Snuggs about Sarah and how awesome she was, how much I was enjoying learning from her. I so admired the way she seemed to be leading by example in a way that wasn't at all intimidating. Humility and grace oozed from her as she guided me ever so gently to allow God to push me past my comfort level. I started that Bible study with my own completely different agenda, and through the grace of God, the leading of the Spirit, and Sarah there holding my hand, I came out of it ready to make a radical change for God's kingdom. Granted, that didn't end up the way I thought it would either, but you know what they say about telling God your plans! I'm positive He gets a good  chuckle out of me! 

At the same time, Cricket was coming home daily telling me about Eric. He loved playing with Eric, talking to Eric, eating snack with Eric. And about halfway through the semester I saw Eric and his mom at pickup. His mom was Sarah. "How cool is that! Cricket loves this kid with the awesome, on fire for God momma! Way to pick 'em, son!" 

Through various avenues, we got to know Eric and his mom a little better over the course of the year, growing to like them ever more. They are good people, just really deep down Godly people. The kind you can't help but love. 

I was starting to gather tidbits here and there that had me wondering about Sarah's daughter. Comments in Bible study about challenges at home, comments at preschool pickup about therapy schedules, but I certainly hadn't put it together yet. 

Then it happened, one day I was early for pickup and I couldn't help but grin as I watched a sweet little girl bounce meanderingly down the hallway. She rounded the corner with some sweet giggles, which faded quickly as she saw an unfamiliar face. I saw Sarah coming behind her and was filled with excitement to get to know more of this sweet family. 

They sat on the floor across the hallway, and I realized quickly that this wasn't going to be a traditional get to know you! The little girl was uncertain and hesitant, but the sweetness glowing from her eyes was as thick as the honeysuckle in July. She leaned in to her momma, barely glancing at me out of the corner of her eye. I waved and smiled. I strained my ear in an attempt to hear the conversation between mother and child. I only heard enough to catch the girl's name. Lily. 

I didn't put it all together right away. Then I got an email from Sarah regarding something about Bible study, and I realized that her last name sounded strangely familiar. Then, I googled, I mean...what else does a befuddled momma do? Finally, I put it all together. My first thought, "How awesome is our God? That faith, that so true you can see to her core faith. He made Sarah perfectly for that little girl. He placed Lily perfectly in Sarah's care. I guess maybe He knows what He's doing with me as a mom, too, then!" (I was in a pretty rough place with Buttercup at this point.) 

And several months later, here's where we find ourselves:

Over the summer Cricket went to Eric's birthday party and held hands with Lily a large percentage of the time. The party was at a bounce house facility. You know, climbing, jumping, sliding. Not exactly hand holding activities. He may be a little smitten.  He's audibly pondered making her his wife someday...

Snuggs and I stopped by their house briefly a few weeks ago and Lily spoke more words to me than I'd ever heard her say previously. She kindly informed me that she was ready for me to leave, but that Snuggs was going to stay with her. Isn't that ALWAYS the way! ;)

Cricket is in absolute agony that Eric isn't in his class this year. He is coping by creating an artistic rendering of Eric's family farm every. single. day. Three weeks of preschool and counting...  There are variations, "The cows on Eric's farm." "A party at Eric's farm." "The hayride at Eric's farm." 

Lily's family is in the midst of a yearly fundraiser for Prader Willi research.  I suggested to Snuggs that I was feeling called to contribute. We discussed an amount, and I sent him the information. About a week later he informed me that he had doubled our discussed amount, because God is moving in my husband's heart <3

Previously, our only discussion with Cricket regarding Lily's differences was in response to his concern that she "Doesn't talk too good." We talked with him about how God creates each of us with different strengths and weaknesses. He remembered that Lily was really good at climbing! (I laughed, remembering Sarah telling me how Lily loves the sensation of falling just like Buttercup!) He went on to note that she is so kind! 

But, after making our donation, we felt that it was important to discuss a bit further with our son. It amazes me that these "difficult" conversations always take the same pattern. I go in confident that it will be easy, that I can handle it. Midway through my second sentence I become stricken with how innocent and inexperienced he is, how he has absolutely no way to conceive of the harsh realities of this world. I become completely terrified about how to prepare him, how to fill him in, how to break it to him that the world isn't all bubbles and twirly slides. Then, he responds with such a beautiful simplicity that I am completely renewed. I realize that I don't have to teach him the whole story today, and that the little part he is ready for is totally manageable. Finally, he concludes the conversation with some solid, completely convincing statement about how he's simply going to do something about it. And my heart just oozes with love for this kid, with his heart of gold, that God gave to ME! 

So, it went like this:
Me: "You remember how you noticed that sometimes it's hard to understand Lily's words? How we talked about how her strengths are different from yours? Well, Lily's body works a little bit differently, and there are some doctors that are working hard to try to help Lily's body and other kids like her. Do you understand?" 
Cricket: "Yeah, momma, I love Lily. She's a great climber. Is she ok?"
Me: "Yeah, buddy. She's ok! But her momma and daddy are asking some of their friends to give some money to the doctors to try to help Lily's body work even better. And Momma and Daddy decided that we did want to help, so we gave some of our money to help the doctors learn more about helping her body." 
Cricket: "Well, I have money to help, too!"
Me: "Yeah, buddy, I wanted to ask you about that...

And he ended up emptying his "Give" jar, which had 13 weeks worth of earnings in it. 

Cricket: "I wanna give it ALL to Lily!" 

I'm not sure yet, where this story goes. I don't think we've learned all of the lessons from it yet. 

I know that one year ago, when I read that article, I had no idea how our paths would cross. 

I know that Cricket loves "exceptional" Lily just the same way he loves her "typical" brother, but that in noticing her differences, he is providing us with an opportunity to pave the pathways for how he views differences for the rest of his life. Dear God, that's a terrifyingly huge responsibility. 

I know that we are doing our very best to teach him to love, love, love like Jesus.  That we are making every effort to validate his noticing that differences exist, and to normalize that for him.  

I know that I've been taught about Christian giving, and about not letting the left hand know what the right hand does and such, and I know that the rules are totally different when you are working to raise Godly kids. That somehow, I need to explain the deeds of my right hand to my growing kids behind the back of my left hand...or something like that. 

I took a video of Cricket explaining his $3.90 donation and sent it to Sarah. I don't know if she shared it with Lily. I don't know if that's the right thing, because I'm not in their shoes. I sent it in spite of feeling a bit nervous. But I sent it anyway, because regardless of the ways it could conceivably be misconstrued, I know that God honors a humble heart, and there's not much sweeter than my son dumping out his "Give" jar just because he loves her daughter, and that sweet girl deserves to feel that love!  

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