A Mother's Journey
My heartfelt book, Losing Alex, which I wrote after the loss of my first baby, Alex, who was stillborn at full term, is now officially an AudioBook and I couldn't be more proud and humbled by the amazing voice of Marsha Waterbury, for lending her talents for my story.
It isn’t every day that a TV show surprises me, in a good way, nonetheless. I am a late arrival at the “Game of Thrones” obsession, and the one thing that I cringed about prior to watching the first episode was how they were going to portray their “little” character,...
October 2002 – A fun memory of Disneyland with Nicky, almost 6 years old. We spent the day with a couple of other EB families and it was a blast. It’s fun to remember the good times too. More of Nicky’s story in the book… Thank you so much for...
When Nicky was born I was told of anemia being an issue with RDEB (Recessive Dystrophic Epidermolysis Bullosa). With this knowledge I gave him Ferrous Sulfate supplements as suggested by his pediatrician thinking that would fix it, but somehow I was unaware of how serious anemia could really become. It...
Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. Time and patience have brought me a long way. I have a sense of peace about things that is hard to...
I cling to the hope that someday in the not so distant future I will know what it means to see my son being free from the daily suffering he endures. In the meantime the only thing I can do is continue to spread awareness. I am not a millionaire...
October 2010 – Nicky here was almost 14 years old when we went to Minnesota for a counsel for a Bone Marrow Transplant. My darling boy was just out of anesthesia here while we were waiting for our ride to take us back to the hotel. They had just taken...
As I said in my previous blog, my favorite show, Outlander, was going to have an episode about a stillbirth. I was looking forward to it because to date, no regular TV show in 21 years had tackled this particular loss properly in my view. There have been movies, or...
My little guy! Nicky here was 1 month old, this photo taken on New Year’s Eve 1996. I had just gotten his face all healed up from the scratches he had on his face due to his nails, so at that time I resorted in putting gloves on him to...
Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. Nicky loves and cherishes his hands, and wrapping them is as important to wrap for us as any other part of...
Several years ago I was watching an interview with Supreme Court Justice Sonia Sotomayor on 60 minutes and she stated that while she enjoyed being a judge, the most upsetting thing for her was to learn that there is true evil in this world. Some people are dark, extremely dark. Up...
My sweetie pie! I just want to pick him up and cover him with kisses. Here he was about 6 months old in the late Spring 1997 and taking a nap surrounded by pillows. I will forever regret not bandaging his hands back then, I just did not know they...
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...
Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. My philosophy was always to just let her grow up and to be there if she needed me. ~Shirley MacLaine. A...
