This year, so far, has been horrible. I try to do fun things and distract myself as much as I can, but the undeniable truth is there, always there. Nicky is in pain. Always. At this point we’re waiting for a sleuth of appointments with various specialists (GI, Dermatologist, hydrotherapy etc) and hopefully as soon as possible, a surgery for a new ‘hole’, as the old g-tube hole is absolutely 1 million percent hopeless. It bleeds, and it doesn’t want to heal or close on its own. This has been going on since early January, so seeing Nicky dealing with this for 4 months, 2 hospitalizations and 2 surgeries later, I honestly feel as I want to just disappear. I am so tired. I want to hide myself in a little corner and cry. But, I cannot. I need to be strong for Nicky, and when he’s with his dadRead More →

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 →

There is a unique kind of grieving that special need parents live with every single day. Yes, we like to live our lives as normal as possible, but then, SLAM, something happens that reminds us how fragile our children’s lives really are. True enough, my Nicky is beating the odds, he’s very much alive and ready to fight and I am ever so grateful he is, especially since I have so many friends who have experienced the loss of their children, and since I have buried a child myself, I know exactly how that feels. I want to delay that horrible fate as much as possible, while continuing to hope for some kind of treatment to come along. That does not change the fact that my hopes and dreams I have for my child die a little more each day as I watch him struggle to just survive. When Nicky was fiveRead 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 →