mom here now

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

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

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

It was dark outside the hospital windows when the little squeezes began. I hadn't felt them in years, but I knew them immediately. And with them, you drew me inside of myself. Inside of you. Inside of us, together. I remember saying to your Dad, "I'm going inside now." It was effortless, automatic, as if I were an expert meditater. I miss those hours of quiet oneness with you. An experience unique in all my years of living, in all my days of motherhood. On the outside, the adhesive and wires connected to my belly began to set off alarms. Our nurse ran in and out of the room, over and over. But you and I, we remained steady. Together, wrapped in a focused embrace, almost beyond the reach of the voice that ordered, "Turn to your other side!" "Get on your hands and knees!" We moved to the commands of the caller, but the dance belonged to us. B reathing in, we oxygenated. Breathing out, we released all fear. At one point, the nurse hit the button and

It's 5:13am on November 18, 2022. The body knows. It remembers, it wakes me up with a tightness in the chest. I search for my inhaler. It can only do so much. Over these past four months since Viggo died, I've experienced my grief as an ocean. My own private ocean. Sometimes it feels like a private ocean on a lonely planet where I am the only inhabitant.  Sometimes I can step into the river of grief, that great rushing river that connects my grief to the grief of all the bereaved throughout all of time. The river is overpowering, communal, ancestral, bottomless. I belong there, too. The river of grief gives me perspective because it brings me into contact with the grief and loss of others, it reminds me I am not alone, it pushes me along and does not let me stay stuck in one place. The river is a transcendence. Not a transcendence of my grief but a transcendence into all grief. But this post is about my ocean. When Viggo died, I felt myself suddenly dropped into the middle of a

  Cultures around the world and from the beginning of time have set apart the autumn season to honor death and dying. There is a deep sense that autumn is when the veil between worlds is at its thinnest. In the Northern Hemisphere right now, the symbols of death are all around us. The lengthening of night. The goodbye song of the geese as they fly in formation. The letting go dance of the leaves as they spin from Sky to Earth. The smell of bacteria and mycelia performing their alchemical duties of decomposition. Formerly brilliant flower heads turned black and gone to seed. In Traditional Chinese Medicine, fall is the season correlated with the metal element. The predominant emotion is Grief. Metal is a pure substance derived from the earth by a process of reduction. In the same way, in autumn the living world is reduced, returning back to its source in the Earth. The main organs of fall are the lungs, whose branches and alveoli mirror the branching of plant life both above and below t