While spending the weekend at his dad’s, Nicky sent me a video on my phone, showing me how the little plastic cover for his g-tube had broken off. He could still “close it”, but it would not last long. I told him that we could change his tube today when his daddy brought him back and he said OK, but I am still reeling from seeing the video of my angel with yet, another obstacle. For those that never had to change a g-tube, let’s just say it’s 100% gross and very painful. I am no nurse, I never wanted to be a nurse and just to think I had to learn to do this kind of stuff makes me queasy. The first time that I had to do it I was beside myself-the whole story of that day is in my book. In the 16 years since Nicky gotRead More →

After I lost Alex at full term 20 years ago, the one thing I could not do is watch anything “dramatic” on TV or the movies. “ER” was popular back then and I avoided it like the plague. 20 years later, Medical Dramas are still hard for me to watch. I was crying so much at the time that I realized that I needed to laugh, I needed to do things that would make me smile and forget, even for a moment, all that I was going through. So, TV shows like “Friends” & “Frasier” became my salvation. A few weeks ago I had a great conversation with a new friend and once he found out that not only I had Nicky to care for, I also lost a baby at birth and our family also struggled through my husband’s health issues… he looked at me startled. “How are youRead More →

Last night I came across an old blog of mine circa 2001, and the words I spoke on that blog are as true today as they were back then. I am not sure if I am sad that my attitude has not changed, or happy to know I was right in feeling the way I did so long ago. I wrote this a little over a month after Nicky had a throat dilatation that, for a couple of days, the doctors thought it went terribly wrong. They feared they had perforated his esophagus. In the end they didn’t, but I was in *hell* for a couple of days. Here is what I posted: “monday, august 6. 2001 I am a little upset today. Some people seem hell bent to put down parents whose only lifeline someday is hoping there will be a cure for their dying child. What is itRead More →