Showing posts from June, 2023

A Forgotten Mother’s Day

This post was originally published by Courageous Parents Network on May 22, 2023. I only had one Mother’s Day with all three of my children alive. I wish I could say something poetic and beautiful about it.  But I don’t remember anything from that day.  I had to look back through my photos to figure out what happened. My husband went back through his, too, because he also could not remember. I found pictures of my mom and I shopping for an outdoor rug for our back deck. He had photos of our medically-fragile baby, Viggo. For weekday care of Viggo, my mom and I worked in shifts. As a result, we hadn’t spent much time together outside of handing off caregiving duties since he came home from the NICU in February. Our family could not travel because Viggo was too fragile, so we decided to beautify the back porch. I can only guess that is why we went shopping at the hardware store together for Mother’s Day last year. I should have known it was my only Mother’s Day with Viggo. In fact, I did

A Framework for Medical Decision-Making When a Cure is Not Possible

This p ost was original published by Courageous  P arents Network on March 2 0, 2 023. This post is my first attempt at distilling into words the medical decision-making framework my husband and I developed during our son Viggo’s life. It was the plane we built while flying at 30,000 feet. I like to think that it actually helped us glide safely to the ground when, at first, it seemed like a crash landing was inevitable.  Our guiding principles were twofold:  First and foremost, every choice must affirm our son’s dignity and worth as a human being. He was more than a patient, a medical curiosity, or a collection of body systems that could be divided and conquered by an army of subspecialists. He was a beloved son, brother, grandchild, cousin, nephew, neighbor, and member of a community. Second, every choice should minimize  avoidable  trauma and suffering for Viggo, his siblings, and ourselves. As we understood it, there was a baseline of suffering and trauma that came with Viggo’s diag

A Letter to Myself, One Year Ago

This p ost was originally published by Courageous  P arents Network on February 8, 2 0 23. You don’t recognize me, but I recognize you, though it pains me to do so. I see you, held together with fresh stitches, supporting yourself on wobbly feet over Viggo’s isolette. This is a nightmare you are waiting to wake up from. You want to—need to-–escape. Yet you are taking your ibuprofen and Tylenol on schedule and starting to pump breast milk, even though your baby cannot be fed at all right now, and you only held him once, and your hormones are all over the place, and your body and mind are trying to catch up with the present reality. Everything about this situation is wrong. The emergency C-section at 32 weeks and 5 days. Viggo’s club feet. His little imperforate anus, barely a pin prick, unable to pass more than a small black pearl of meconium.  He has a huge, unwieldy C-PAP lodged up his tiny nostrils, obscuring most of his face, and held in place by a cap that covers the other half of