The Release

For five long years I've been managing Charlie's nutritional health and pediatric feeding disorder. I've spent countless hours searching for cups, analyzing straws while hypothesizing the efficiency with which he will be able to drink. Fluid consumption an integral part of the holy trinity of childrearing: calorie consumption, adequate sleep and regular stools. 

For years I have obsessed about his nutrition, his calorie intake. I believed that it was the key to helping him overcome his developmental delays. I believed it was something we could overcome with enough hard work and dedication. I thoroughly completed feeding journals while silently harboring the idea that his oral motor dysphasia was my fault, tangible evidence of my failure as a mother.

After surviving ground zero and being discharged from the hospital I naively believed we were over the hump. Charlie had survived his near death experience and that was all that mattered. I chanted a mantra of "moving forward" as I attempted to withstand the aftershocks that began with the death of my mother-in-law in November 2016. I charted a course bobbing and weaving my way through team meetings, Early Intervention assessments and power pumping, all the while spiraling, albeit out of control, in a futile attempt to create the gravitational force required to hold my chaotic life together. 

The first two years of Charlie's life I spent sleepless, analyzing every calorie. I fortified breastmilk, supplemented with coconut oil and baby cereal. Yet his weight gain lagged as did his overall development. As mother I donned an invisible cloak of shame bedazzled with gems of culpability. The shame overwhelmed me rendering me disengaged and spiritless. I watched as the delicate web of my professional life unraveled. 

I crawled away from the incendiary dumpster fire that once resembled my teaching career. I focused all my energy on advocating for Charlie. I clung to the idea that I was going to find a cure. I was going to fix his problems. I grasped at celestial threads that I believed carried "the answer." I bore my grief over Charlie's developmental delays along with my professional suicide, compressing my angst into a molten rage powerful enough to keep our world revolving. Or so I thought. 

I fixated on "curing" Charlie. Consequently, I was unable to trust anyone. I couldn't relinquish my control. I was tethered to the chaos, the illusion of control, to the quest for a nonexistent cure. We had an amazing EI team which became key influences along the way. Although I believed our speech and language pathologist to be highly qualified, I refused to trust her professional expertise. I feared relinquishing control, that it would lead to more parental failure. 

She knew Charlie's lower frenulum was tethered. All the indicators were there: torticollis, slow weight gain beginning at 3 months, a preference to breastfeeding on one side, low tone, language delays. The list goes on and on. Yet for all the guidance I was given, I refused to learn about tongue ties. I dismissed the notion of "the release" believing the risk too great. I purported it would be too invasive thus, exacerbating his feeding challenges. 

For the past three years I've clung to these misguided threads that have woven our life together. I've donned my chef hat and my baseball cap trying to avoid "the release" all the while restrained by self-deception. After five years of avoidance, five years of searching for any outcome other than remediation, I finally released control accepting that we are a some assembly required family. The truth is Charlie has physiological disabilities that I cannot fix.

Charlie's tongue tie was released on October 12, 2020. For three months prior to his remediation we worked on orofacial myofunctional exercises under the guidance of our feeding specialist. To ensure proper healing I used gauze to hold his tongue while moving it from side to side five times a day over the course of two weeks. Unfortunately, Charlie wasn't able to complete the exercises independently so I was bitten multiple times a day. I fiercely channeled my strength and am pleased to report he has perfectly healed. 

Presently, he is learning to properly swallow and drink out of a straw. In my hindsight, from this new vantage point, I can see the error of my ways. This all would have been so much easier had I simply trusted Stephanie. Only now can I see my misguided preconceptions of it means to be fed, healthy.

For five years I was paralyzed by my fear, scared everyone would know the magnitude of my parental failure, scared my life would unravel as my career had. I've always been a passionate advocate, championing Charlie has become my full time job. I simply feared releasing control would further destabilize my life and the tenuous balance I had achieved. I was wrong. 

I no longer adhere to self-created, false notions of what it means to be fed and healthy. My son is five. He's still learning to chew. He eats a blended diet that helps him have the fuel he needs to develop his fine motor fingers and gross motor toes. He is disabled with a pediatric feeding disorder acquiring new skills and independence everyday. I'm learning also. Learning how to forgive myself, to release my guilt. In turn, letting my shame die by sharing our story.