Our Unique Grief

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. ThatRead More

Still?

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 isRead More

Babies are not supposed to die. End of story.

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 wasRead More