L'histoire d'une maman dragon : La poésie au service du deuil et des maladies graves
Par la maman d'Alden, 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.
Now, as the mother of Alden, I sit with my own grief, every day. That wholehearted attention I would enlist at moments of need at work is now attention I cultivate as continuously as possible. Alden’s health is unstable. His time is finite. That threat of loss turns up the contrast, blacking out all the insignificant deadlines and unwashed laundry, and revealing only that which is most precious.
J'ai parfois la tête qui tourne, alors que je suis assise sur le papier froissé d'une salle d'examen, tenant Alden à la place de mon stéthoscope, et posant les questions sur son plan de soins au lieu d'y répondre. Je me suis formée pour être le praticien, pas la mère du patient. Quoi qu'il en soit, je suis reconnaissante pour cette formation. Elle m'a énormément aidée à m'orienter au sein de son équipe de soins de santé très étendue et à défendre ses besoins. Ceci étant dit, ce que je sais ne me protège pas des inquiétudes qui semblent interminables.
Perhaps it is due to my prior medical knowledge, or just my proclivity as a parent to ask all the “what if” and “tell me every possible outcome” sort of questions, but I seem to have a painfully well-informed picture of all the possible medical and family issues in our future. I struggle to sit with the uncertainty of it all. When will he have his next big seizure? How will this affect his sister? Will he have regressions of any of his small but meaningful gains? Will my marriage withstand these traumas? What will his demise look like? It is easy to get lost in unanswerable questions.
In the months since learning of Alden’s medical diagnosis, I have been working to cultivate mindfulness practice. Instead of sinking into the emotional pain of anticipated events, I am more welcoming of uncertainty. The questions my fearful mind generates are nothing more than passing thoughts. Allow them to pass; stay present. The grief and unanticipated shift from family life I had imagined were catalysts for an inward reshaping: post-traumatic growth. I am learning to trust that I will continue to adapt with what comes next. Regardless of what it looks like or when it comes, I will handle the next hurdle.
Grâce à cette attitude, je m'identifie maintenant comme une maman dragon : une mère d'un enfant dont le diagnostic limite la vie. Aujourd'hui, j'honore la maman dragon qui est en moi. Elle est féroce, et parfois très en colère. Mais le plus souvent, elle est compatissante et forte, trouvant des moyens de prêter attention au moment présent, d'accepter la tristesse et de partager la joie.
Suivez mon parcours sur www.adragonmomswords.com
Instagram @lauramonroewill #aldenanthonysmiles
