Author : Silvia

370 posts

I know I am beating the drum of Epidermolysis Bullosa Awareness every single day, especially on my ebinfoworld.com facebook page, but this cause is very close to my heart and it really needs everyone’s attention. There are so many conditions on this planet, many of them rare, and it’s hard to get the word out …
I can’t let October go by without posting at least “something” regarding either my experience with Pregnancy Loss or at the very least offer my thoughts on the matter either on how I feel more than 2 decades after my loss or the state of Awareness. Am I and are we moving forward? My answer …
August 1997 – Nicky and I on our way to my anniversary dinner…. Nicky looks so spiffy, but despite the smiles, behind the scenes, I was a mess. At this point I was taking Nicky to the Physical Therapist twice a week and she became sort of a confidant; I felt she was one of …
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. Believe me when I tell you, never in a million years I could possibly exaggerate Nicky’s condition. I became the parent who hopes against hope despite …
As EB Awareness week is approaching, I always hear the “numbers” of EB being floated around. One official website states the incidence of EB  is 1 out of every 20,000 births. Another official website states One in about 17,000 live births. Yet another official website states 1 in 50,000. The truth is, most likely nobody knows for …
I am a very spiritual person. I grew up catholic and I have attended service at many different churches from many different denominations, mostly to satisfy my curiosity, so I am very well aware of how incredibly sensitive this issue of religion is. Your beliefs are important and they should never be belittled nor should …
March 2001 – I was thinking about this picture just the other day when we were driving back from Stanford and I was so happy to find it. Isn’t Nicky cute? “Casa De Fruta” used to be just a big fruit stand, now it’s a mini-amusement park, complete with a restaurant, rides and tons more, …
If there is a sentence I hear a lot from family and friends in general is how “strong” I am. Before the stillbirth of my first baby, before the miscarriage, before Nicky’s birth, I somehow thought that strength had something to do with “grin and bear it”, or having somehow the ability to have no …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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. …
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. Never bad mouth the mother or father of your children to them. Never use your children against their other parent. NEVER! Be the first to say …
October 1998 – This is my dad’s absolute favorite photo with Nicky, taken at the Milan airport in Italy on the day we were flying back home to Phoenix. Nicky was almost 2 years old. I know it may seem bizarre since they are giving us their back, but dad spent a great deal of …
One of the big differences I noticed between the me before I was a mom (and a special need mom at that) and after is how I started isolating myself. And how I find myself still doing it. Aside calling my parents once a week, I never call anyone. Ever. Oh yes, I return texts …
It seems to me that every time I turn on the news lately there is someone telling me I should fear something. I ought to fear this, be angry at that and hate the other. I also noticed that the people that buy into this way of thinking are extremely depressed, suffer from anxiety or …
I am so glad Nicky and I survived last week because it was exhausting. Monday and Tuesday I drove us to Stanford and back with an overnight stay. One way is 6 hours. I was trying to explain to my parents how amazing but tiring this trip is for us. I love driving, always did. We …
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. EB is one of those conditions that needs to be SEEN to be understood. I wanted to be known for what I LOVED, not for what …
I watch in amazement the Olympics once again this year and I am always blown away. I am not sure if it’s because I’ve never been athletic and anything I see makes me feel fearless or what. I have my own little hero in my house, one that blows me away at every turn. Stuck …
As many bereaved moms know, the grief over the loss of our children is not something we can ever “let go”, “get over”, or “forget about it”. We understand that it may be uncomfortable for people when we mention their name, but the wrong response to hearing our child’s name is not one of these …