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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 even short movies about it …
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Several years ago an EB mom I used to correspond with said something pretty profound and perhaps a little controversial that I wasn’t sure if I agreed with or not. I normally am pretty clear how I stand on issues, after-all I am in my early 50s, and while I am still open to discuss …
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 prevent further damage. I tried …
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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. Nicky loves and cherishes his hands, and wrapping them is as important to wrap for us as any other part of his body. It’s just incomprehensible …
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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 to that point I am …
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 would web and contract. No …
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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 …
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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. My philosophy was always to just let her grow up and to be there if she needed me. ~Shirley MacLaine. A Mother always has to think …
May 1998 – I love this picture of my grandma Rina (then 95 years old, she passed away in 2005 close to her 102nd birthday!!), playing around with Nicky when we spent 8 months in Italy. My mom is holding him. We had gone to Italy to basically save me from a nervous breakdown. I …
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The other day Nicky had his first appointment with a Physical Therapist in our home. Aside the fact that this was the first time in his life that his insurance approved such a thing, I wasn’t sure exactly how she was going to accomplish anything with Nicky, knowing that moving at all is just so …
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January 2009 – Nicky was 12 years old in this picture showing his “talent”, LOL. He can’t really keep his legs straight to walk, but he sure can do other things… crazy! More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Follow Comments
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I came across a blog yesterday that I could truly relate to. It was about a mom adjusting to her special needs daughter transitioning from “childhood” to “adulthood” after graduation. In her blog she states she learned 5 things about this new stage of her life as a parent of an adult with multiple disabilities, …
“Losing a baby at birth, followed by a
As I explained quite thoroughly (I hope) in my blog “Dumbing Down EB“, EB varies quite a bit. There are forms that are lethal to babies, forms that get better with age, forms that get worse with age; each form of EB has several subtypes, which can all vary wildly. This is why when other patients …
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… because taking photos of beautiful things makes me happy! Enjoy!   Love & Light, Follow Comments
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As many of you know I read a LOT of books. And in my humble opinion I don’t read enough! But I wanted to take 5 minutes out of my day to let everyone know about this particular book I am reading right now because it’s really, really inspirational. I came across this book about …
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On my radio show/podcast yesterday I tried… or, rather, attempted, to illustrate the genetics involving EB in a fun way, evoking the dormant (sleeping) recessive gene and wishing it could sleep more often. Alas, genetics are hard to explain. While after nearly 20 years I am on a weekly basis describing the blisters Nicky gets (and pictures do …
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June 2008 – Nicky was 11 years old in this picture taken at Camp Wonder in Livermore (CA). I started taking Nicky to camp in 2003 when I was pregnant with Connor and we’ve gone every year since. Nicky told me the other day that he’ll go as long as they allow him, “it’s MY …
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As some of you may or may not know, I love photography. Of course I do not get the chance to travel much and when I do I take my son to the various hospitals, so my photographs tend to concentrate on the areas that I see along the way and the little things, flowers …
The Nurse showing me Alex's perfect little foot.
I came across a short movie (23 minutes) the other day, produced by a UK charity called “Abigail Footsteps” called “The Deafening Silence” and I just cannot get it out of my head. I’ve seen other movies depicting… or trying to… show the emotion and devastation of stillbirth, and while they were mostly good, this one, …
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February 2004 – Nicky was 7 years old in this picture with his little brother Connor, who was 6 months old. I love this picture. I can’t help but remember how much Nicky loved his little brother when he was little, he simply adored him. Of course their relationship has changed over the years and …
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It has been said that opinions are like… ahem…(feel free to fill in the blank)… everyone has one. We all know that well, don’t we? I came across a blog just today that explains people in similar positions as mine that go through exactly this. Let me give you a couple of the examples they give: What …