La historia de una madre dragón: Afrontar con poesía el duelo y la enfermedad que amenaza la vida

By Alden’s Mom, Laura Monroe Will

When I first started expressing concern about Alden’s development, everyone told me not to compare Alden to his big sister, Hadley. I was not comparing. As a mother and a nurse, I knew in my gut that something was seriously wrong. After weeks of second-guessing my instincts, I finally caught one of Alden’s atypical movements on video. It was Memorial Day, 2020. He was 4.5 months old. I sent the video to the on-call doctor at his PCP office, who took one look at it and asked us to please bring him into the emergency room immediately. Forty-eight hours, an EEG, and an MRI later, our family was forever changed. 

Alden has a severe form of brain malformation called polymicrogyria. Poly (many), micro (small) gyria (brain folds) - his brain folded wrong, all throughout his cortex. Having completed all genetic testing available to date, we have no answers as to why this malformation occurred. We were told to expect seizures, severe developmental delay, and feeding difficulties — all of which became more apparent over the next couple of months. We were not told about the power of grief, its ability to shake you to new depths and unlock compassion, creativity, and even joy. 

As a nurse practitioner, I attended the Mind Body Medicine Annual Conference offered by the Henry Benson Institute in Boston the two years leading up to Alden’s diagnosis. When his brain malformation shattered every expectation I had for my life and my family, I turned once again to the stress management and resilience training I had learned as part of the conference taken as a clinician; but this time, those skills learned became a daily practice. A part of that training speaks to the importance of creative outlets, be it humor, journaling, art, or writing poetry. I started writing poetry and this quickly became an important way for me to process and connect with others. I am excited to have the opportunity to share what I have been working on. As we are coming up on the first anniversary of Alden’s diagnosis; I recognize what a year of deep pain, reflection, and certainly transformation. 

Prior to becoming Alden’s mom, I was working as a palliative care nurse practitioner in Boston.  Before entering the house of one of my palliative care patients, I paused in my car and took a few deep breaths, sharpening my attention for the conversation ahead. Talking with an individual and their family about illness is a wholehearted endeavor. Sitting around each patient’s living room or kitchen or bedroom, alone or surrounded by caregivers, I follow my map for serious illness conversations. With time-tested language, I share a diagnosis, answer questions, and make medical recommendations. Each conversation cradles the patient’s life, and death, in the minds and hearts of those present. Something about being so aware of the final contours of a life, makes us grasp for meaning and hold each other with greater acuity. As a palliative care nurse practitioner, I was well versed in sitting with others' grief and shepherding them to establish goals of care.