Every person in the world has known heartache and suffering. Sometimes I think about the children with my son’s condition that live in third world countries, or countries like Syria, ravaged by war. There are so many people on our beloved planet that do not have the basic necessities, water, food, clothing, let alone bandages and medicine. At the core we’re all the same, we all want the same things. From the Quechua woman in Peru to the famous actor inRead More →

September 1997 – I love this picture of 10 month old Nicky with his dad, if only because of those BIG blue eyes! His poor mouth was in bad shape, he had already stopped eating baby food at this point and could only ingest liquids. On occasion he could chew on a cracker, but it was a rare occasion and I would only attempt at giving it to him if his throat looked like it could handle it. Our firstRead More →

Minnie Driver is probably my favorite actress nowadays. A few years ago she tackled a subject near and dear to my heart by portraying a mother who had a stillborn baby in “Return to Zero“. Her performance was simply phenomenal. She totally nailed it. Her character’s  experience was also fairly close to mine, and there is truly something to be said about watching someone on TV feel what you felt. It’s hypnotizing. I am a very “visual” person anyway, so thisRead More →

Caregivers are selfless and do what they do because they love the person they care for, most often without monetary compensation. If you know a caregiver and want to show your appreciation, here are some ideas: Encourage him or her to relax by a gift of bubble bath items Pay them a sincere compliment Take his or her kids to the movies or out to the park for the afternoon Don’t compare their life or their loved one they areRead More →

December 2008 – Nicky in his Mecca! He was 12 years old in this picture at a GameStop at the Antelope Valley Mall. When Nicky was 4 years old I bought an old SuperNintendo so I could teach him to play Mario Kart; I loved that game! I thought that this is something he could do to entertain himself. Before long he got very good and to make sure he won I used to sit in 2nd place with aRead More →

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. But in this lifetime, my purpose is my son. My purpose is to raise awareness for this awful thing we live with every day. “How are you still smiling?” he asked me. I admit I didn’t know how to answer. “Because I don’t want to cry” is what I told him.Read More →

Can you remember a time in your life when you felt completely helpless? I do. It was the day when a Doctor escorted us into a small room in the hospital after Nicky was born and told us the grim news that not only our newborn son had a rare, extremely painful incurable disorder, but that he would most likely not see his first birthday. I was in shock. Only 19 months earlier I had a baby that was stillbornRead More →

Almost every day, as I walk by Nicky or get him something, I notice he’s busy watching a “how to” video on how to “cook” something. When he was younger, he would often help me make the cupcake batter or would insist in putting the batter in the cupcake liners or would help putting the sprinklers on. He would be so excited to eat a fresh cupcake, and I would make sure I would make some kind of frosting of his likingRead More →