Our Diagnosis Story
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 a 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 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 of four have moved out of our Boston condo; preferring to be closer to nature and my parents on Cape Cod. Thanks to the pandemic, my husband Dave and I have been able to work from home, and much of the wonderful care Alden gets from Massachusetts General and Childrens Hospital has been from the comfort of our living room via telehealth! Alden is now a toddler, but he is not yet toddling. Spastic with left-sided weakness, his mobility, communication, and feeding skills are very slow to develop. Having fallen off his growth curve, we decided to place a G-tube, which has improved 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. It’s a different journey than that which I though I was signing up for when becoming a parent. I am changed: a dragon mom.
If you are here because a child you care for is newly diagnosed, please know you are not alone. It will be okay. This is especially scary right now. It will always be hard, but it does not have to be tragic! You are at the beginning of a new journey, one that you did not sign up for; allow your self time to adjust to the new terrain. All emotions are valid, and all emotions are temporary. Your child, like all humans, is perfectly imperfect. Reach out to me and others in your communities. Ask for help and grace. Parenting is messy, beautiful, exhausting, fun, stressful and above all else, full of love. It takes a village - I’m happy to be a part of yours.