When my daughter’s diagnosis of trisomy 18 was suspected, the fear from her doctors was palatable. I joined them at their table of fear. Feasting on statistics, tragic stories, and comfort care solutions. Medical termination, hospice, and/or comfort care were prescribed as an antacid to the burning, churning, upsetting, nauseating condition of chromosomal disorder. The culprit to the discomfort was only growing within me. I sat wide-eyed, fork in hand, and slowly chewing on the stories of pain, irregularities, spoiled dreams, and rotting fruits that they fed me. I was told I was at risk for preparing and feeding my family a meal laced with poison.
I cried, I researched some of their “facts,” and I shared in their disappointment. One day, I realized I had fear like them but not the same fear as them. I feared my daughter’s passing, I feared losing her. I naively thought they did too.
I realized the medical personnel I interacted with had much fear around my daughter. They offered services to comfort me. They served me pity sprinkled with empathy. But their fear was not that my daughter would die. They did not fear of my daughter’s demise. In their system, people miscarry all the time. Neonates die after birth often. Trisomy 18 babies are seen as incompatible with life. Parents are told this and the medical world moves on, on to serve those deemed compatible. They did not fear my daughter’s death, this was as familiar to them as a live birth. Their fear was nowhere near mine. I feared death. They feared life. They feared her growing and kicking, and her “deformed,” “diseased” heart beating. Her clenched hands reaching for her mother’s care, her possible cleft lip suckling for a feed, and her suspected descended tummy aching to be fed. As I noticed this and questioned this, they feared me. They feared my request for an altered menu. My hunger for medical interventions and my order placed for a decadent scoop of parental autonomy.
I quickly became the dinner guest who pushed herself away from their table like a defiant child refusing to feast at a controlling parent’s table. They feared me refusing to stop her in her growth, they feared my plan of interventions, they feared what others had shown me, and I tasted treats outside of their medical system. They feared her getting full interventions, they feared her. They didn’t fear her deceased, aborted body, or her passing with the assistance of their morphine. They feared her living, they feared a challenge to a protocol that they can feed parents leaving a clean, cleared table now available for other guests. They feared me, the loud dinner guest who did not abide by the rules and ordered off the menu. The guest who talked of alternative meats and new recipes, the guest who maybe got a bit “too” excited and didn’t use her inside voice. The person who brought a screaming baby, tantrumming toddler, and sneering adolescent to the “adult table”. The guest who spilt the milk and didn’t cry, who questioned the cook and critiqued the chef. They feared Rose, they feared me, and I no longer feared trisomy 18, but feared what I was being served. Fear of what vermin-infested kitchen and ill chef concocted this feast that lay before me.
This a story of me excusing myself from a table of fear, a table of lies, and a table of ignorance. This is a story about a mom who refused to believe their fear. I would not ingest the lies that to intervene would be cruel. That my child would suffer and she would die alone on a table, never knowing love if I sought lifesaving care. I left their table and searched for a new one. And, oh, what a feast we found.
I invite you to pull up a chair. Have a seat at our table, I have a story to tell. I hope you enjoy sweet fruits of the spirit, and wild, loud children of God, strong-willed families, and lots and lots of joyful prayer, praise music, and sweet victories. Because our table includes all of that, and you’re invited!
Take a seat.
Content by Meri Riley Willard of the Wisdom Over Worry Facebook page reposted on ChromoChallenges with author permission.
Disclaimer: Very minor grammatical edits applied for clarity.