“Brave,” “Fighter,” “Warrior” are all words I could use to describe Henry. It’s easy to hear those titles and imagine a firefighter carrying a woman out of a burning building or a mother lifting her car in a burst of adrenaline to rescue her child. Henry has taught me another, perhaps more honest, way to picture my heroes. He’s shown me that those titles can also apply to a child who stubbornly refuses to quit.
After Henry’s 45-minute seizure, he had a serious regression. He lost his words and all his vocalizations. Other than crying, he didn’t make a sound. He lost his ability to walk and the ability to stand without support. He could no longer visually track anything or respond to his name. He didn’t change facial expressions. He was a shell that reminded us of our former toddler. When you’re raising a typically developing child, especially a newborn, it can feel like you’re constantly pouring into him. You give and give and give and then you give some more. Parents, often times, feel like they’re getting nothing in return. I learned this isn’t true. When you’re feeding your child and they smack their lips or make happy “yumumumum” sounds, they’re pouring back into you. When you bathe your child and they giggle, they’re pouring back into you. When you reach out to your child and he reaches back to you, smiles, or walks towards you he’s pouring back into you. It wasn’t until I lost all those micro-interactions with Henry that I understood what a gift they were. Those sweet smiles and babbles make a sleepless night worth it. They motivate parents and deepen bonds. Intensely loving Henry, when he didn’t have the ability to demonstrate his love for us, stung.
Henry’s recovery hasn’t been immediate. He came back to us in pieces…with one step, one vocalization, and one half-smile at a time. Each accomplishment was clawed and fought for with a tenacious and dogged resolve. This child stormed battles that would bring grown men to their knees. He isn’t completely “healed,” but he’s our Henry again. It’s interesting, if you knew Henry before his seizures began, you would think about how much he’s lost. If you met Henry two years ago, you would think about how much he’s gained and progressed. Today, when we get an intentional facial expression or a “mom mom” from Henry it’s worth celebrating, recording, sharing it with the world, and rewatching the moment a million times! He is the most heroic human being I’ve ever known.
(We were so excited about his 24 steps on an uneven surface and then standing without support!!!)
Henry’s slow comeback taught me that we need to be careful about putting God in a box. Flawed theology tells us healing should be immediate, miraculous, and will happen on this side of heaven. It says healing is based on our degree of faithfulness. When we approach the Great Physician saying, “I’m here. I’m praying in faith. I’ll have my healing now.” we turn God into a transactional God. “God, I completed a + b and that should =perfect health.” So, when healing doesn’t happen immediately or happens slowly through years of therapies, we begin to believe God doesn’t hear us. We begin to think God doesn’t love us, that we aren’t faithful enough, or that God isn’t good. God is good, goodness is who He is! Our Heavenly Father isn’t transactional, He’s relational. He never promised us a pain free life, but He promised us His presence in pain. He wants to be with us when we’re happily running and skipping along in our walk, but He also wants to be with us when the terrain is rocky and we’re grumbling about wearing the wrong shoes. If we take our idea of God out of that box, we might meet Him on physical therapy mats cheering on a 3-year-old. He’s relational and wants to be loved by us with all of our hearts, minds, and souls. (Matthew 22:37)
