I Lean Heavy on Heaven, Most Days

The sky is unblinking. It’s as if all of heaven is sitting across from, incredulous like a mob boss asking, “What do ya really expect?”

     The sky: it’s an off-white, a white that has had the tiniest speckle of black gently folded into the paint, making it slightly grey, only noticeable against the snow that’s accumulated. Fresh snow: the truest measure of white, revealing everything else to be concealing some amount of darkness.

      I sit on the floor. On the dog mat on the floor. On the dog mat on the floor that I bought with my impartial paraplegic son in mind. He plays on it, it’s thinly padded, but warmer than the wood that we find ourselves crawling and sitting on for hours at a time. I stack his favorite toys beside it: there’s an electronic zylophone shaped like a caterpillar that whimsically changed all the normal children’s songs lyrics to be decidedly caterpillar and leaf-munching themed ex: “Mary had a caterpillar, caterpillar, caterpillar…” There’s a car “garage” with a slide for his hot wheels to go down. There’s his favorite drumset/keyboard/Chinese-children’s-choir-renditions-of-children’s-classics songplayer: and the device also plays drum beats at the push of a button. Sometimes he plays with a magnetic fishing pole that jiggles fish and sings songs when you “catch” one. Other times he’s chasing balls of various sizes and bounce-capacities around the floor on a rolling board we call the “belly-scooter.” 

      But now he’s napping. And my taught, dry, itchy skin is freshly watered with little wandering tracks of hot tears because I am, once again, as usual, powerless over these conditions. I stare at the sky and I think, God, do something. God of heaven, heal my son.

      He’s a smart boy, he picks things up quickly and his brain is always going– you could trace a thought with your finger as you watch his eyes light up– as he makes various discoveries about the physical laws of our world. He wanted to sit in Dad’s “big boy chair.” He’s been getting tired of his baby seat, with its tray that fastens him securely in place. I stand next to him and allow him to sit in Dad’s chair, and he dances and smiles and petitions that I hand him a banana. I hand him a banana. He smiles and feeds himself the banana. He puts it down to clap for himself, since we are in the habit of congratulating him on tiny victories. I clap along enthusiastically, “GOOD JOB! EATING A BANANA!” 

      I am beside him, things are going well, he’s singing and eating the banana, he’s beaming at me, look at me, in Dad’s chair, eating a banana, like a big boy. Teddy always wants to do things that Dad is capable of doing. He motions for the sippy, I turn to get it. I half turn my body for one, not even, one second. Teddy is scooted in all the way, military tucked into the table. Teddy was sitting up tall and proud. Teddy now was swan diving to an impossibly small gap to the left before I could even grab him to keep him from going over the side.

      My eighteen-month-old impartial paraplegic son —the one with a pre-existing spinal cord injury and a laminectomy of the Thoracic-9 vertebrae, is  lying on his back on the floor, crying.

      I swoop. He is in my arms and I am holding him with all the force and benevolence of God. I am holding him to my chest, soothing him, walking him. I check every part of him, like a mother collie, nosing his face, checking his back his head his feet his hands his eyes- his pupils. I have a vast and surprising amount of random medical knowledge– to which I use for rapid calculations: it was not far enough or direct enough of a fall to get a concussion, less than three feet- not totally hard wood but a fake laminate version which is slightly spongier// but, he already has a spinal cord injury from the tumor in his spine that he was born with. The doctors promised the laminectomy shouldn’t add to the risk of further injury but simple reasoning proves that this is false- the back end of the vertebrae is no longer there to protect that side of the spinal cord.

 I give him a bottle, and he soothes instantly. His crying ceases within five minutes. He wants to go back into Dad’s chair and reaches for it as we walk past, instead we swerve to sit in his room. We play on the floor and I’m staring at his legs. They seem to have their own mercurial spirit– that’s where the “impartial” qualifier comes into play. Sometimes, when he awakes and his legs are warm, his legs will contract upwards, bent at the knee, the toes individually moving. His legs are always most responsive to touch and most often independently move when he is waking up from sleep– and they’ve always been that way. 

       But I am trying to discern if he’s moving them less. They look dangly— are they always this dangly? I’m trying to get him to crawl to various toys, but he’s sleepy and ready to go down for his nap, but I want to observe his movement and behavior before I give him a two to three hour remission from my watchful gaze. I need to see that he is, in fact, ok. 

      He is playing with his moving truck and handing me two different books to read him. He is smiling and clapping again. But his legs? I can’t tell if they’re MORE limp than usual. They are often limp. I called his pediatrician who asks me for the typical concussion symptoms: vomiting, not waking easily, fussing that continues, dullness of affect, etc. He has none of them. She tells me to continue to monitor him.

      Teddy wakes up early, because I am at the foot of his crib, overcome by grief and guilt that he fell on my watch, silently praying for God to heal my son. I am crying. I have to step out of his room to sob without making too much noise, without upsetting him.

       We spend the next few hours doing normal activities: eating lunch, him racing up and down the halls on his belly scooter, opening the cabinets to remove my stacks of chicken egg cartons and dismantling them: one by one. He is as cheerful as ever. But his legs are dragging off the back of the scooter. Do they always drag like this? Are they moving less? I am boreing a hole in the lining of my stomach with worry, masticating the questions. I finally break down and call my husband to see if he can come home and give me a second opinion. Luckily, it’s slow day at work today, so he can leave for a few minutes. His fourteen minute drive feels eternal to a worried mother in the throws of panic.

      I tell him I have half a mind to take him to the ER. We both hate the ER. No bones are broken from what I can tell and the manner in which he fell seems to make it unlikely as well– when you fall out of a turn, especially if your body is limp, you’re less likely to snap a bone– I know this from years of learning how to fall safely off a horse. 

        He smiles and takes Teddy into his arms, then places him on the floor and a ball out of reach, observing. “They seem normal.” He says. “Some days they move more, other days they’re like noodles. There’s just no way to tell. Going to ER isn’t going to do anything. He seems happy, he seems to be doing everything he normally does. His legs have always been like this. God made him like this.”

      What he says is reassuring. And his legs have. They’ve always been limp, medical question marks. Will he regain function? If so, how much? Will he be able to one day walk with a walker and braces on his legs? What exactly can he feel and not feel? 

       The next day the pediatrician takes my onslaught of concerns with good patience. “Honestly sometimes I feel like a level 10 hypochondriac where Teddy is concerned?” At first she breaks character and lets out a sarcastic chortle, “YOU? Haha, Not you…” But she quickly regains her professional stoicism and gives me an understanding smile. “It’s hard being the parent of a kid with medical issues. You need to be easier on yourself. Teddy is great. He’s doing amazing. Look at him, he’s fine.”

The days have passed and Teddy seems to be his usual cheerful self. We are laughing hysterically so often that my husband has even asked, “What the heck do you guys do while I’m at work? It seems like you just sit around cracking each other up all day long.” And while I do in fact get many tasks done, it’s not an untrue assessment that we do also sit around cracking each other up, all day long.

I lean heavy on heaven, most days. For now, I try to help Teddy have the best childhood he possibly can. We turn everything into a game. And I continue to pray a lot.