Etched into Our Bones

Our son is radiant. He is delighted by everything; his eyes widen to accommodate new acts of wonder and he speaks constantly, like a spring trickling out of a mountainside. Our son is infatuated with Baby Kitten: he flaps his arms at the very sight of her, and stretches his tiny torso, grasping with all of his might to try to get his hands on that fur. After the Kitten, he always yearns to be with me: to do what I do, to see what I see. And his eyes are so wide, expansive, and blue– I wonder if this new world he’s exploring feels as surreal to him as it currently does to me.

Like how my hands have recently lost feeling in the fingertips. Often, I’m exhausted and my bones and joints are discontented and on strike for more paid vacation time, or something. The other day a blood test cracked the case on a 13-year-long mystery: Lupus. And I was glad, because my pain is finally legitimized by a diagnosis and therefore might be treatable. But emotionally, I have felt like teflon: when I receive bad news these days I am logical and sterile; I nod and ask the medically pertinent questions. This numbness must extend beyond my fingers and toes. 

And in a week my infant son will be having spinal surgery to prevent paraplegia.

 “A laminectomy– to prevent further damage. But the damage that’s already done–I fear he might never be able to walk.”

 I do not worry about our son dying because while I was pregnant the Lord told me that Teddy would have the qualities and gifts of the Prophet Daniel, and that is a promise that has been etched into my bones. God does not kill off His prophets before they have the ability to speak. But He never promised me that my child would walk.

Our friends and family know that Teddy was born with cancer, originally suspected to be a neuroblastoma, but was diagnosed as infantile fibrosarcoma. Days before we would drive down to begin chemotherapy, we received the miraculous news that no chemo would be necessary, the tumor was benign. And every two months since then we’d repeat MRIs with reports that made us feel like we were going from glory to glory: the tumor was continuing to shrink on its own. 

About two weeks ago the oncology team expressed increased concern about the lack of developmental progress in his legs: they still dangle like a marionette. I run my finger under the bridge of his foot and his toes curl, I touch the crook under and above the kneecap and the lower leg reflexively extends. But when we place him in the bouncer they hang motionless–they are almost always motionless. 

For a while we had known something was off. The first time was at two months old when a nurse injected a vaccine into his thigh muscle. She said, “I’ve never seen this in twenty years of nursing.” Teddy smiled and cooed up at us, not knowing that he was supposed to be wailing. His thigh eventually had a raised red knot from the vaccine, and it stood like a monument to an event that never happened.

At our last appointment two weeks ago they referred us to Neurosurgery, as a “follow up, to get them back involved in the case.” So I went without Trevor, because we were reassured this was a routine appointment, the tumor was shrinking, namaste. Therefore, I wasn’t prepared when the neurosurgeon said,  “You can see on the latest scan that the spinal cord is turning white below where the tumor pinches it– that’s damage, that’s not a healthy spinal cord. It can’t deliver oxygen or nutrients.” I saw what he was pointing to, and he continued, “The surgery is just to remove a small piece of bone” (the laminae–from the T9 vertebra). “It’s a relatively safe and common surgery. I recommend that we operate soon or this damage is likely to get worse. If it is left alone there is a likelihood that he could lose all function below the tumor.”

“You mean, like Paraplegia?”

“Yes.”

I left with his card, a tentative date for surgery, and my sweet smiling child chewing on the tail of a stuffed dinosaur, being toted behind me in the Riley’s trademark red wagon. As I struggled to lift his carrier out of the wagon, I watched another mom with a large duffle bag and a baby carrier glide past me breezily as if on a moving walkway. I limped out to my car, and paused with the phone in my hand, wondering how best to tell my husband that his son might not ever walk.

Is there a bad way to respond to trauma? For days, I couldn’t really cry, I blinked through blurry eyes as I focused on the logistics of everything. My survival skills are finely tuned weapons honed from a lifetime of war. I was calling doctors and asking questions, reading medical literature about the surgery, and informing some of our close family and friends. But when we walked into church for Teddy’s baby dedication and a friend asked, “How are you doing?” I set off into uncontrollable sobs and headed for the bathroom.

But then we worshiped God. Trevor and I passed Teddy back and forth between songs. I bobbed and swayed Teddy to the music and watched those wide roving eyes sparkle with wonder. I nuzzled his hair and ear and so badly wanted to tell him, this is what Heaven is like. And we were all reminded that the Lord is for us and with us and behind us and beside us. I may have had a lifetime of war, but the miracles and graces from my heavenly Father outnumber the stars in the sky. 

But this knowledge seems to sway back and forth, for sometimes I have complete confidence in God’s providence and plan, and other times, I’m watching Teddy stretching, or completely folding over flat at the hips, struggling to get a toy just out of his reach, and I ache at how badly he wants to move. Sometimes, it’s easy to say, ‘no matter what happens, God will use the outcome for good,’ but other times, I’m imagining him in a wheelchair at the side of the playground watching other kids swing on the swings, or kick a soccer ball back and forth. Those are the times I most want to tear my clothing and sit in ashes. 

Despite this sorrow, I still have this knowledge, a knowledge that is not only etched into my bones, but which seems to be the very rhythm my pulse dances to: that for His people, God will take our disabilities, weaknesses, and troubles and turn them into our greatest testimonies. Joseph was in prison for twelve years for a crime he never committed that led him to be second only to pharoah, to save his entire family and people from famine. He said in Genesis 50:20 NLT, “You intended to harm me, but God intended it all for good. He brought me to this position so I could save the lives of many people.” And I myself shout that back to Satan routinely, for I was born with a debilitating condition that I’m in a NDA with myself to not reveal until my memoir comes out, but let it be known that this memoir is going to bring hope to suffering people everywhere, thus, my greatest weakness is my greatest testimony. So I cannot speak as to how God is going to handle this, but He is handling it. 

God you are my promise in all of my pain, you are the one that gives me breath to breath, you make my sun rise and set, and you will always rescue me. And with these increasing miracles, we will raise up a child that knows you intimately, a child that knows that you will always rescue him, too. Your miracles will literally be etched into his bones.

“The light shines in the darkness, and the darkness can never extinguish it.” John 1:5 NLT