Oh no. Ryan is gaining weight. Again. I just called our pediatrician’s office to schedule a physical exam for Ryan. I inquired as to when he was there last for a physical and what his weight and height were. “Date of appointment: October 20, 2020. His height was 5 feet 11 inches. His weight was 137 pounds.” Before you gasp at how skinny Ryan was, let me tell you this: He was born Continue Reading

One of my favorite questions to ask my podcast guests is this: IF YOU COULD DREAM BIG, FOR THE DISABILITY COMMUNITY, WHAT WOULD YOU CREATE OR CHANGE? I am going to answer my own question today. *I dream about every mom having loving, life-giving friends, who sit in close proximity to them, emotionally and physically. Who truly “get” them, validate them, and understand them. I dream Continue Reading

"Mom, can I have a hug? Sometimes it feels hard that I have Prader-Willi syndrome."I want to hold on so tightly some days. I want to tell you how much you are loved and cared for and that I, too, wish I could hug away Prader-Willi syndrome from you.I want to hold on Continue Reading

In the daily tasks of caregiving—is there a task that you are the MOST vigilant about? And then resent that you are the “only one” (seemingly…) in the family who is soooooo vigilant about this? We live with a locked kitchen. The refrigerator and pantry are locked at all times due to Ryan’s symptom of “hyperphagia,” food-seeking behavior, and never feeling FULL. Even if he just ate a meal, Continue Reading

You get THAT diagnosis. In spoken words. In an email. In a phone call. On a piece of paper. You swirl with the lostness of your life. Of your child’s life. Your thoughts race and run marathons. Your emotions spill, freeze, and overpower you, all at the same time. Your feet become steady again. You resolve. You research. You rise up. Strong. Determined. A warrior for Continue Reading