After years of therapy, Emma can articulate most words, but that doesn’t mean we have conversations. She gets her point across, but abstract feelings and emotions? No. We are left to wonder.
While her brothers are experts at communicating their feelings about everything from the fairness of life to the tastiness of the food on their plates, Emma often resorts to wordless whines or grunts of frustration when she isn’t getting her way. The other day she stood at the bottom of the stairs for several minutes trying to formulate a word. When she yelled out, “Mad!” I had to force myself not to throw a party. I was thrilled that she’d been able to express what she was feeling.
(Not that it changed anything — she was NOT taking those crayons up the stairs. The artist-in-residence lost those privileges a LONG time ago).
But back to my point. We tell her we love her. We show her love. We quite literally pour our lives into hers and make every effort to give her a joyful life.
But the reality is that there are things about Emma’s life that are challenging. For her and for us.
One of our biggest challenges is food.
Emma is allergic to just about everything. It’s easier to list the foods she CAN have than it is to list the foods she can’t. On top of that, she has eosinophilic esophagitis. Basically that means certain foods irritate and damage the lining of her esophagus. The solution? Don’t eat those foods.
Because of this, Emma’s dietary landscape is quite small.
She’s her mother’s daughter and if she can get her hands on an Oreo, she’s going to eat it. She’s well acquainted with cake, and she knows that the pizza she eats and the pizza everyone else eats are NOT the same. If you leave her alone in a room with access to Goldfish or brownies, you can expect to find them missing when you return.
I often wonder if she thinks we dislike her because we don’t allow her to have those things. Does she think we are unloving or uncaring?
When I see her grab a peanut butter and jelly sandwich and I take it out of her hand right before she eats a bite, does she think I’m MEAN?
After all, those foods are yummy. Her brothers can eat them. Why can’t she? And bless her heart, she does not understand how bad those things are for her. It’s so hard to communicate why they aren’t bad for everyone else, but they are for her.
So when I have a chance to give her something that she enjoys, I try to take it.
I had that chance this morning. When I dropped her brothers off for camp, I turned to her with a big smile and said, “Emma, let’s go to McDonalds. I’ll get you a hash brown. (And mommy will get a ginormous iced coffee).”
Her response? “Chick-fil-A.”
My response? “Baby, McDonald’s is closer. (And while I LOVE me some Chick-fil-A, I prefer McDonald’s iced coffee).”
She said okay and I pointed the van toward McDonald’s. But I felt like a mean mommy. We got a quarter of a mile down the road and her little voice piped up from the back of the van….”Chick-fil-A.”
I drove a mile in the opposite direction all the while thinking that we were going to spend more money, I was going to get a so-so iced coffee, and she probably wouldn’t even eat the stupid hash rounds.
When we pulled into the drive-thru, Emma sang out, “Yeah! The right place!”
In that moment, the extra time, money, and not-so-awesome coffee no longer mattered. I’d made her happy and I was as thrilled as she was. It made my morning to be able to give her something she wanted. To bring her some joy. To say “yes” to her. And even though it meant jumping through a few extra hoops, her happiness filled me with delight.
As we pulled from the parking lot, I felt that nudge in my spirit.
“You know that’s how I feel about you.”
And I had to ask myself…do I?
When God takes something that I had in my hand? When He refuses to give me something, even as He lavishes it on someone else? When no matter how much I pray for something, He keeps saying, “NO?”
Do I believe that He loves me?
Do I?
I know I don’t act like I do. I get mad. I even tell Him I’m mad. Or sometimes I just pout and trust that He’s clued in to my frustration.
Does that hurt Him? Does He look at me, the One who loved me enough to send His only Son to die for me, and does He wonder what it would take to convince me? He’s already given me everything.
Well, except for those things that He knows are bad for me.
They aren’t necessarily bad things. And they aren’t even bad for everyone. But they are bad for me. Maybe they would lead me to sin. Maybe they would ruin my life in a way I can’t fathom. Maybe they would cause me to chase after things other than to chase after Him. Maybe they would, quite literally, kill me.
So to those things, He says no.
Not because He’s mean.
But because He loves me.
I’m sitting here with tears in my eyes and a barely sipped on iced coffee, listening to Emma play in her room, and I’m amazed at the lengths my Father goes to to remind me of His love.
I’m not sure what’s going on in your world. I’m not sure why He’s told you “no” or why He’s not giving you something you want—maybe even something you really believe you need.
I am sure of this. He loves you. He loves me.
I wonder… does He feel that way about us? Does He look forward to the day when once and for all we will be eternally certain of His love for us?
For those of you who are new here and may not already know, our daughter Emma was born with Rubinstein-Taybi Syndrome, a syndrome some people say is caused by a “misspelling” of a specific chromosome. We say God is an excellent speller and He makes no mistakes. We believe that Emma is EXACTLY who God intended and created her to be.
Grace and peace,
Lynn
