Self-care sounds lovely in theory. It’s the bubble baths and yoga classes and quiet mornings with hot coffee. It’s the pastel Instagram graphic reminding you that “you can’t pour from an empty cup.”   But what if your cup has a feeding pump attached to it? What if your mornings start with seizure meds and therapy appointments?What if your nights are interrupted by alarms, coughing, or the low hum of machines? What if self-care doesn’t just feel hard — it feels impossible?   L

Mommy and Iris Thanksgiving has historically had problematic beginnings, as we’ve all come to recognize. What most of us were taught growing up often overlooks the historical violence against Native Americans. I personally have learned to hold reverence for those truths, as well as space for the spirit in which Thanksgiving has evolved, and that was instilled in me growing up. I take time to decorate for the holidays, have a good meal with loved ones, and reflect on what I am

My husband and I flew out to Boston for this year’s 3rd Annual Nano-rare Patient Colloquium after assembling a small “army” of support at home. My mother-in-law, our night nurse, and our nanny all pitched in so we could focus for a couple of days. It took a coordinated effort that rivaled a NASA launch, but somehow everyone got where they needed to be — and we made it onto the plane with both coffee and optimism intact – ready stand alongside the wider community of families a

Jude I first heard the term glass sibling  shortly after my twins were diagnosed. The phrase refers to the brothers and sisters of...

Jude and Iris The Importance of Recognizing Anger in Unfair Situations A friend of mine and fellow medical mom sent me a text the other...

Logan and Iris with big brother Jude Hello and Welcome! As any parent to a medically complex child can relate, when we learned about our...