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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 …
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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 …
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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 …
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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 …
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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 …
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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. …
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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 …
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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 …
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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 …
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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 …
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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 …
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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 …
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I came across this blog this morning and it gave me pause… It spoke about the sacrifices of a special need parent and what’s involved, which include depression and problems with self-worth among others pressing issues, such as isolation and financial problems. I saw myself in this post… the myself of a few years ago, and …
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… and just like that, it’s over… We got back from Italy late last week and I am sitting here pondering how it went so fast. But the truth is, it didn’t. It didn’t feel fast, I can still feel the warmth of my family and the beauty and love that surrounded me. And while …
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My trip to Italy with my boys is scheduled for Monday and I couldn’t be more excited. I saved 4 years for this trip! I can’t wait to hug my mom and dad and of course, everyone else! The next few days I will be making sure we get everything we need for our trip. …
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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. It’s also very important to note that EB is just an umbrella word. A word that throws together all blistering conditions no matter how they are …
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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, Tyrion Lannister. Normally anyone that …
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 your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & …
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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 wasn’t until he was 7 …
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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 explain sometimes. I try my …