CPN | Nicholson Family: Processing a diagnosis of polymicrogyria through poetry

Nicholson Family: Processing a diagnosis of polymicrogyria through poetry

Meet the Nicholson Family

When I first started expressing concern about Alden’s development, everyone, including his PCP, told me not to compare Alden to his two-year-old big sister, Hadley. But I was not comparing; I was noticing, intuiting as only a parent can, that something was seriously wrong. After weeks of second guessing myself, 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 MRI later, our family was forever changed.

Alden has a severe form of a brain malformation called polymicrogyria. Poly (many), micro (small) gyria (brain folds) – his brain is 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, feeding difficulties — all of which became more apparent over the next couple months. We were not told about the power of grief, its ability to shake you to new depths, unlock compassion, creativity, and even joy.

Since his diagnosis, our family has moved out of Boston, preferring to be closer to the beach and my parents on Cape Cod. Thanks to the pandemic, my husband Dave and I have been able to work remotely from home, and much of the wonderful care Alden gets from Massachusetts General and Children’s Hospital has been from the comfort of our living room via telehealth! Alden is now thirteen months old. Spastic with left-sided weakness, his mobility, communication, and feeding skills are very slow to develop. Having fallen off his growth curve, he is scheduled for surgery to place a G-tube; which we hope will improve his nutrition and quality of life. He is a smiley and social young boy. He loves his sister, lighting up with a squeal when she engages him. He is curious about the world around him, observing rustling tree branches, studying new (masked) faces, batting his hands at toys. He would probably play peek-a-boo all day if I had that sort of stamina.

As a part of our journey, I started writing poetry and this quickly became an important way for me to reflect, process, and connect. I am excited to have the opportunity to it with you. If it speaks to you, please feel free to leave a comment at connect@courageousparentsnetwork.org.  I would love to hear from you! Visit Laura’s website https://www.adragonmomswords.com

 

 

 

 

 

 

 

 

 

 

 

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