You probably know that Lexi doesn’t say much. Her communication is essentially nonverbal, highly nuanced, and surprisingly robust. She’s a persistent communicator who will do what she needs to get her point across. Where she’s short on words, she’s long on eye-contact/body language/find out after the fact communication. For example, we discover that Lexi wants to steal Carter’s Pizza — after Lexi takes Carter’s Pizza. As she jams Little Caesars into her food hole, we’re all deciphering that yes, Lexi just communicated stolen pizza directly to her mouth, and Carter is crying a little bit.
We discovered Lexi needed to go to the hospital when we found ourselves riding with her in an ambulance. Up to that point, all she had was an off-and-on fever controlled by Tylenol, and spent most of her time in happy Lexi mode. Her temp spiked that afternoon. She began to shudder, like we’d never seen before. High fever… no appetite… WHOA, was that a seizure? Better safe than sorry. A 911 call later, and we were at the ER.
Because of the rules of HIPPA (not to be confused with hungry hungry HIPPA), I won’t go into Lexi’s medical detail. I will insist, however, that hospital coffee is made with the same recipe they use for hospital meatloaf. All I’m saying is that something wasn’t quite right. I will also say that she’s home and doing just fine, no thanks to that coffee they brought her dad. I guess it’s good to know that they’re focusing their attention on patient care and not caffeinated beverages.
Anyway, with a nonverbal person, it’s a LOT of guesswork and sleuthing as to what’s really going on, whether we’re talking about a medical emergency or what kind of Pizza she wants. Actually, we know that: she wants Carter’s pizza.
With a non-verbal, special needs child, you find yourself suddenly aware of the smallest variations. Subtle non-verbal details become blindingly obvious when something is off. Unique gestures or guttural sounds offer You’ve probably heard the saying that “the eyes are the window to the soul.” Lexi doesn’t speak much, but her eyes express at least a page-worth.
Brittany and I end up looking at Lexi, then at each other, a surprisingly number of times each day. “Do you see what I see?”
The docs got Lexi settled and stable. Brittany stayed with her in the hospital overnight while I ran the house with our airport-like comings and goings. Pancakes and Sausage accompanied our brief devotional time at the breakfast table, which included prayers for sister Lexi. Once everyone was in their respective school buildings, I went back to the hospital. I walked into her room, sterile and artificial in its comfort, and looked at my wife. Still beautiful, especially considering she slept in a medical-grade recliner. Having Britt there with Lexi is such a good, good thing. There aren’t better hands for her to be in.
My attention turned to the patient. Her eyes. Without speaking a word, Lexi looked right at me and said she was scared, Dad, and wanted to go home.
It reminded me of a long time ago when Malachi, then only 16 months old, needed an x-ray of his neck. They wrapped him up like a burrito and laid him on that cold table, then led me behind the lead-plated wall where I could watch out the tiny square window as my son lie there screaming, his eyes calling out to me with terror. I’m not sure what was louder that day, his eyes or his scream, but I guarantee they heard him from down the hall. I really hope he doesn’t remember that. I’ll never forget.
It pushes a button in a parents soul to see your kid in distress. Our inclination to swoop in, be it Malachi off an x-ray table or Lexi from a hospital bed, is limited by the necessity of medical care. It has to be so confusing to our kids, as I imagine it still is for Lexi, to see the one person who is supposed to keep them safe just passively standing there as strangers mysteriously proceed with intrusion all around them.
In that moment, what does my kid see in my eyes?
When she saw that I was in the room, Lexi looked at me for a moment, then came the crying. Brittany pushed Lexi’s hair out of her eyes and said soft mom-like phrases to her. I walked over and said “Dad’s here… it’s ok… everything will be fine…” Of course, that’s a bit of a parental misnomer. Our presence doesn’t affect the situation in a hospital nearly as much as it does at home. I can give her a slice of pie, which usually fixes most things. Tylenol for an (assumed) headache is easily added to a spoon-full of applesauce. iPads can be plugged in and a new set of double-A batteries make that plastic bus toy sing again. But when we’re talking about a diagnosis, an IV, and heavy-duty antibiotics, there’s not much a parent can do besides sit there. Squeezing the IV bag, I’ve learned, doesn’t make the medicine go faster, it just makes the nurses mad.
I wonder how Jesus comforts Lexi in those moments. I know He does. Well, at least, I ask him to. I believe that she has a spiritual sensitivity that you and I can’t quite pull off because we’re so limited by our perceptions and presuppositions. Does Lexi see the eyes of Jesus?
Jesus is the Word made flesh. He’s all about the words. Yet, his eyes pierce us with truth and look at us with grace. What was it like to look in the eyes of Jesus when He was on the cross? Only a few words were preserved in scripture, yet countless books were likely written that day with His eyes.
Fast forward a few weeks and everything is much better. I look in Lexi’s eyes and see peace. I want her to see the same thing in my eyes. Brittany has her in the tub; soon it’ll be bed time. Her bed is still new-ish and, I’m guessing, is much better than the hospital gurney she was in for a few days last month.
Lexi is rubbing her eyes. That’s universal for “tired”. We’re all kinda tired these days. Like the old song says, we’ll keep turning our eyes upon Jesus.