Scar Tissue

“My belly hurts,” Holt says to me as he curls his knees into his chest and lays his head down on the couch. “Can you point to where?” I say as I walk closer to him. Holt reluctantly sits up, lifts up his shirt, and points to the right side of his stomach, not far from his belly button. His finger lands directly on the half-inch scar that he’s had since he was 10 weeks old. A tiny, line shaped indentation from his first and second surgery. A tiny incision the neurosurgeon made to pull tubing from a shunt in his brain to the cavity of his belly. I place my index finger on the scar and gently press inward. “Ow! Don’t press on it!” he exclaimed back to me, plowing his face back down into the couch, “that hurts!”. The space behind the scar felt knotted and tight. “Scar tissue,” I say to myself. 

Holt has two cysts in his brain, one towards the top and back of his head that naturally drains from a hole they poked in it during surgery. The other cyst fills the cavity where the midline of his cerebellum should be, this one a result of his Dandy Walker Malformation. At 10 weeks, the cerebellum and location of the second cyst were too close to his brain stem to simply poke a hole in it so they placed a ventriculoperitoneal shunt in his brain. The shunt also consists of a tube that flows down the back of his neck, over his collarbone, and into his abdomen where it dumps cerebral spinal fluid for his body to naturally reabsorb. This is a process that our body does naturally if a cyst isn’t blocking the passageway. 

To avoid having frequent surgeries, they coiled tubing into Holt’s abdomen like a garden hose to slowly unravel as he grows. Only a few a months ago, Holt complained of pain in his neck and when asked where, he placed his fingers directly on the line of his shunt tube down the side of his neck. Worried that something had disconnected or malfunctioned, I called the neurosurgeon.“Probably scar tissue,” the nurse said; scar tissue that had tightened his neck and was likely pulling on the tube as he grew. 

Most days pass and I don’t even think about the fact that Holt has a shunt. There was a period of time when I never thought that would be possible because all I did was think about it; like the four weeks following his surgery when his brain incision wasn’t healing. Four weeks of constant and vigilant monitoring of the incision’s appearance and its care. There was a time that I gave a shit that one day I might have to tell Holt that he couldn’t play rugby or football because it was too dangerous with a shunt.  Holt’s newborn innocence felt ripped from my hands the moment we received his diagnosis, followed by endless appointments, and complications from surgery. There was a time that I carried the loss of that innocence and the grief that followed, so closely, that every little loss felt like additional weight that couldn’t be carried. Even a small, insignificant, not yet lived loss like one day taking the possibility of playing a game away from him.

For the most part, what makes Holt different is invisible, even to him. Dandy Walker Malformation is not a one size fits all diagnosis. Some people live well into their teen or adult years without even knowing they have it. They never develop a cerebral cyst like Holt, they never have to get a shunt. Some people have diverse physical and motor development, affecting how they get around in the world or eat and digest their foods. Some people develop “typically” like Holt has thus far. 

Growing with Holt has made the time in between thoughts of his shunt and Dandy Walker longer. Watching him grow and move and learning his personality has made his Dandy Walker diagnosis and his shunt seem less significant. His medical appointments have gone from weekly, to monthly, to quarterly, to annual, and we’ve even dropped appointments with certain medical specialists along the way. The vigilance that characterized being Holt’s mom has slowly untangled, like a garden hose or the coiled shunt tubing inside his belly. The time of Holt being a kid now outweighs the time of him being a patient. The time of me being his mom now outweighs the time of being his medical advocate, therapist, and home nurse. Somewhere within these transitions there has been healing. Some of that healing feels complete and some of it forged together with scar tissue.  

Every so often new spaces of growth tug on old scars. Like the first time I got to register Holt for preschool and filled out his registration forms. Name, date of birth, parents’ names, emergency contacts, and of course, health information. What exactly do they need to know? How do I keep it to the facts? What are the facts? Who is his primary care provider? Do I include his diagnosis? Do I need to explain what a shunt is? For what and when should we be contacted? What hospital should he go to for an emergency?? Is that all they need to know?  

It’s school. It’s new. It’s growth. It’s development. It tugs on scar tissue. 

The night before Holt’s first surgery I was scared that I might lose him completely. Hearing his diagnosis and the what-ifs of what his life might look like had wiped out my visions of him and for him. It was all too raw and unreal for them to be reshaped in that moment, they were just gone. Laying with him the night before his surgery, his head was so filled with fluid that his face was almost unrecognizable. He’d have his head cut open just hours from that moment. He hadn’t eaten in hours and was completely uninterested. It would take years for me to realize this, but what I did in that moment was distance myself from him emotionally. I was so afraid to love him because the idea of losing him was too real. I developed my own scar tissue directly around my heart so that if I lost  him, maybe my heart wouldn’t completely shatter into an irreparable amount of pieces.

When I first learned of scar tissue and the discomfort it could cause Holt as he grew, the nurse suggested massaging the spots in his neck that were uncomfortable to break up the tissue. The experiences I’ve had being Holt’s mom have hardened me and also softened me at the same time. My scar tissue that formed from Holt’s first year got me to the second, third, fourth, and now fifth year. I’ve added more along the way—but shed more than I’ve added. He grows and I grow alongside him. Sometimes that growth tugs on the scar tissue and it can no longer be ignored, but rather addressed, massaged, seen, and worked through.