Thank you everyone for your encouragement and support!

As the mother of a special need child, life offers plenty of special challenges.
Sometimes they are so troublesome and devastating all I want to do is crawl up in a ball and cry.
But through it all my child's smile and courage helps me get on with my day and help him live a life as full as possibilities as I can.
He is my inspiration, my joy, the reason I get up in the morning, and the source of so much love.

To Nicky, with love,


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The Longest Ten Years of My Life

     A couple of weeks ago my son turned ten years old and it felt like a gigantic milestone. For the first time in years the image of him in the incubator when he was a baby kept haunting me and my dreams. Why did I feel like that? Why now?

     Ten years ago today my son had just been discharged from the hospital. He was so little, so precious, and so sick. The dermatologist had just finished telling us that we would be back in the hospital to treat infections on a weekly basis and that he would most likely die before his first birthday. We brought our bundle home not knowing what the future might bring. Now I know that this Doctor didn't know much about the form of the condition my son has to make these claims, I don't think my son "conquered" or "beat" the disorder or "proved the Doctor wrong" as very rarely children with my son's form of EB die before their first birthday, yet, thinking back, ten years later, I still think that him being alive right now is a miracle, as so many of his peers have succumbed from this awful disorder along the way. I do feel he was spared. He faced so many trying situations in the past decade, from several surgeries, infections and school disasters to when he was suffering from malnutrition and I was forced to place a g-tube on him, which saved his life. 

     Ten years is a long time in any lifetime, but to me the past ten feel like a lifetime in itself. It's hard for me to imagine how my life was like before bandages, before wounds, before cries, and without my precious son! I keep hearing people telling me how time flies, how is Nicky already ten years old, but to me, these have been some amazing and long ten years. 

     The question remains, would I change anything if I could go back? The answer is no. There is nothing that could tear me away from caring from my boy or anything I would have done differently. Maybe I would have put the g-tube on him quicker or used different bandages on his hands when they were healing from surgery, but I know in my heart I did the best I knew how at the time, and when I knew better I did better.

  To Nicky... my love. Here's to ten more amazing years!

December 10, 2006

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