I remember vividly being pregnant with my first baby, Alex. Finally my dream of becoming a mom was coming true. I waited an elated 9 months for his arrival, and on the day after he was due we found out he had died in utero. He was stillborn 2 days later. Seven months after that unthinkable loss I miscarried a baby girl at 8 weeks. Thirteen months after that I finally held Nicky. He was a bundle of warmth that felt like heaven. After that initial bliss we found out he had EB, and everything else was a blur. For the longest time I felt lower than low. I am not sure I felt ashamed per se, but I was definitely distressed about my story, I felt distraught, even tormented by the memories of holding my dead newborn and surely poking blisters on my precious new baby did not help myRead More →

I came across this picture of Nicky the other day while transferring photos from one computer to another and I had to stop and admire it. This is Nicky, he was 2.5 years old, with a needle in his hand, poking his own blood blister on his wrist. Just the fact that I could trust Nicky to handle a needle at that age, when I could not dream of giving a needle to my healthy 10 year old today, speaks volumes at the amount of grace, patience & maturity Nicky had to have at such young age. But that is only the tip of the iceberg as far as he’s concerned. Nicky adds a certain family dynamic that is hard to explain or even illustrate. In a way, Nicky is shy, withdrawn. He does not speak much and it is hard to have a conversation with him just because IRead More →

Marilyn Monroe was right in this, one of her favorite quotes. It’s all make believe. It truly is! I was grocery shopping just yesterday and one of those gossip magazines caught my eye… ‘stars without makeup’. I never buy gossip rags, but I do make an exception when we get to see the stars, the stars everyone tries to imitate because they seem to be so perfect, so flawless, so amazingly beautiful, being, well, so amazingly human! Yes, I bought it. Guilty as charged. I do buy the ‘worse beach bodies’ issues as well. Why? Because then I feel normal, away from the celebrity culture where the woman’s ‘perfect’ body mimics the one of an escapee from a nazi concentration camp. Our current culture glamorizes it even more than people realize. Think about what we see on TV. Every single TV show is filled with a cast of gorgeous, glamourous thin folks, mostlyRead More →