I am not sure I mentioned lately how much I absolutely love and adore my husband. He actually has a reminder on his phone to “comfort me” at this time of year. And he does. His strong hugs are so helpful to me I am not sure he knows how much. Yes, I know, it’s been a long time. 23 years is a very long time. I am sure there are some out there, surely those that have never lost a child, that wonder “how long” this kind of grief lasts. Grief is a wild animal. We are all very familiar with losing grandparents or “older” relatives, we sort of expect it. I haven’t lost my parents yet, but I am sure I will be a total mess when I do. I know I will outlive them, I’ve always known it. I know that loss will be coming at someRead More →

The contradiction of it all is that parents of special need children find their strength not truly in themselves, but through their love for their child. If this election cycle has taught me anything is how to raise my standards. I see people go so low it’s disgraceful. If any of us are going to be able to raise above and become better versions of ourselves, the work is within.  My tear ducts spontaneously go on overdrive when I remember that beautiful, horrible day that I held my stillborn baby. Mothers of stillborn babies like myself don’t want anything crazy, just for everyone to recognize this as the profound loss that it is. I can go most days without a single thought of Alex, but this unspeakable loss is “there”, woven in my psyche in ways impossible to accurately describe. Many of the things I do to keep Nicky healthyRead More →

It’s late February. It’s inevitable. Everything affects me more deeply. I find myself being more melancholy, my grief is more intense, disabling, confusing and all-consuming. My son Alex should be 23 years old in a few days. I didn’t just lose a baby these many years ago, I lost a lifetime of memories with someone that I loved before we ever met. Some of the hardest losses we experience as human beings are those involving children. They go against nature. Children aren’t supposed to die. In my world, however, they do. Oftentimes children with EB die before they’ve lived, like my Alex did. Yes, he had EB, but we did not know it at the time. In my world, filled with families dealing with Epidermolysis Bullosa, children are gone before they’re healed. It’s tragic and gut wrenching, every single time. I cannot say I ever got used to it, andRead More →