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 →

I don’t talk much about Nicky’s big brother Alex in this blog. Alex is my first baby that was stillborn at full term in March 1995. I may not talk about him, but he’s always on my mind. His loss is something I will carry with me forever. His absence is felt, yet his presence is felt as well. It’s hard to really explain what your heart knows without a shadow of a doubt. I know a lot of people have doubts about the “afterlife”. Do our spirits survive physical death? What happens when we die? Most people do believe in heaven, but have a hard time believing in ghosts and supernatural things. It’s understandable. It’s creepy. But if Alex’s death has taught me anything is that our energy, our soul, survives. Too many things happened since his death that cannot be readily explained and are a little too coincidental.Read More →

I know for many, the death of a child, an infant, the loss of a pregnancy is unthinkable. Unfortunately for many, it is a reality. After I lost my first baby, Alex, at full term, I was shocked to find out how many women suffered such loss-the latest estimates state there are at least 100 stillborn babies in the United Stated every single day. Yet, it’s a loss that nobody talks about. Here’s an excerpt from my book “Losing Alex” (available at Amazon) where I explain how hard it was for me to find any book that talked about this kind of loss: “This was 1995; the internet was not what it is today. ‘Online’ shopping was still something that would not take off for several years. If I wanted to find a specific book, I had to search the yellow pages for book stores, thrift stores, used stores andRead More →

In 9 days one of my biggest dreams will come true… I will graduate from College with a Double Degree in two areas I adore, Graphic Design and Digital Imaging. I will be official in being what makes me, ME. It’s a huge accomplishment.  I will relish that moment and that joy, knowing, deep inside, something is missing. While I am very proud of what I was able to do, which was very hard at times to even have the luxury to attend classes, I can’t help but remember that this year, 2013, should not have been about me or my graduation at all, it should have been Alex’s. I will always have that feeling of ‘something is missing’, or better, ‘someone is missing’. Alex, my first baby that was stillborn at full term, would have been 18 years old as of this past March 1, hence he would mostRead More →

Ever since that dreadful, beautiful day where I held and lost my son, I felt a strong need to keep his memory alive. This was not an easy task. It was easier at first. People sent beautiful sympathy cards, flowers. Being part of a support group and speaking with other parents helped, but after having Nicky and all that his tough life entailed living with EB, it became rare. Nobody would EVER say his name nor bring him up in conversation, it was all very uncomfortable and weary. Such an unspeakable loss, unspeakable because nobody wanted to speak about it. Which is what prompted me to break the silence. That is why I wrote his story. Even before Nicky was born, there were times where I felt my strength was tested over and over again. Free baby photos, free baby coupons, free baby magazines would continue to flow. The baby section at the storeRead More →