I Hate EB

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 matters and topics up to a certain degree, there are some things that I just will never change my mind on because my life experiences steered me in a particular direction. That direction being a more empathetic, kind and positive. Yet this issue is one that, after all these years, I am still unsure how to feel about it. I can’t agree and IRead More

Nicky’s Life Part 40

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 to use the softest clothes and covered his skin as much as I could to prevent any possibility of blistering. I started getting his hands “out” at 4 months, but he lost all his nails by the time he was 1 year old. A blessings in disguise, truly. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19Read More

Blog Quotes Part 3

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 to me how this horrid disorder exists and it completely changes our view of life in ways we never knew we needed to know nor learn. Not sure I mentioned lately how much I hate EB. There you have it. I hate EB. This grief thing is just bizarre. I rarely think of Alex and cry anymore, good gosh, it has been nearlyRead More

There is True Evil in Our World…

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 certain she felt that everyone had some redeeming quality, that people make mistakes, as I felt the same, but I was confronted with true evil myself a few years earlier and I knew her words were true and it’s a very scary situation. Before anyone had an online profile, way before facebook or, GASP! myspace, yours truly had a website back in 1997. IRead More

Nicky’s Life Part 39

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 “real” internet back then and no Doctor knowledgeable enough to tell me otherwise. Nicky is one of those perhaps rarer cases of RDEB where his fingers were already contracting when he was 9 months old. By then his index finger was already a permanent “hook”. What causes the webbing and contracting is the scar tissue that builds up due to the wounds healingRead More

Mental Exhaustion

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 and he said OK, but I am still reeling from seeing the video of my angel with yet, another obstacle. For those that never had to change a g-tube, let’s just say it’s 100% gross and very painful. I am no nurse, I never wanted to be a nurse and just to think I had to learn to do this kind of stuffRead More

Mother’s Day Quotes

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 twice, once for herself and once for her child. ~Sophia Loren If you bungle raising your children, I don’t think whatever else you do well matters very much. ~Jacqueline Kennedy A Mother’s arms are more comforting than anyone else’s. ~Diana, Princess of Wales Love & Light, Post Views: 78

Nicky’s Life Part 38

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 needed my family’s help and they were very willing and able to do so. I love my family and miss them more than words can say. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 49

How To Show Respect to an EB Parent

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 painful for him and she can’t touch him at all. My worries however, had to take a backseat when she said something to me you should never, ever say to a parent of an EB child, especially one as old as Nicky. Without knowing anything about EB at all, she told me to “be careful” of what I put on his wounds. “YouRead More

Nicky’s Life Part 37

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,   Post Views: 65

Transitions

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, and while being flexible is something I had to do from day 1 and finding activities for Nicky is surely not something I can’t even contemplate, let alone plan without a considerable amount of convincing, the other points she made were well taken. Point #3 hit me hard. Parents of children Nicky’s age (19) are normally either empty-nesters or have their kids inRead More

From Defensive to Educational

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 with similar forms of EB as my son “question” what he goes through, I get a bit… shall I say… defensive. I think to myself: “Do they think I am lying?” Believe me when I tell you, I never exaggerate, and to be truthful, many times my explanations only tell the tip of the iceberg. I try, really try not to think this way,Read More

Fight With Cowgirl Spirit

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 a year ago when I was in the midst of publishing my book Butterfly Child. You see, I met this woman, Sharyl Saver. Well, not met her in person, but we did talk online. Her daughter Caylin Marie died in April 2000 from Junctional Herlitz EB at roughly 6 weeks of age. When I came across this book I had no idea sheRead More

Having Fun Explaining Genetics

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 a much better job at that), explaining how he inherited the disorder when the parents do not have the condition it it’s still a challenge. That’s the thing with recessive genes. They are tricky. The most visual way to unravel the baffling of genetics is to find some other way to explain it in ways people can understand. We all inherit a gene fromRead More

Nicky’s Life Part 36

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 week” he told me. Surrounded by other EB kids and Doctors/Nurses and Counselors that are so incredibly caring, he feels safe and he has so much fun. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 58

Dinosaur Point

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 and such. I’ve taken so many beautiful photos over the years that nobody has ever seen so I figured I might post them here every now and again so everyone can enjoy them. This first batch I took just yesterday while on my drive back from Stanford near the San Luis Reservoir called “Dinosaur Point”. Apparently they did find some dinosaur bones inRead More

The Deafening Silence

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, in my humble view, is the BEST of the BEST. Of course, I am biased. You see, this particular movie, despite being filmed in a different country, depicts almost exactly my experience. There is so much in this movie I could relate to, it left me kind of speechless. With the sole exception of minor details, such as my mom being with me when theRead More

Nicky’s Life Part 35

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 while they do love each other, they tend to bicker a lot lately. I can’t help but think that this is just normal brotherly stuff, but as a mom I don’t like it and I am constantly playing the peace advocate, lol. It’s a full time job at times, I tell ya. More of Nicky’s story in the book… Thank you so muchRead More

Ill Equipped To Judge

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 you said: God never gives us more than we can handle. What we heard: You’re fine. Quit whining. What you said: He seems fine to me! Or, All kids do that! What we heard: You are a very dramatic person and you should get over yourself. Also, you are very likely a huge liar. I realized lately that I was definitely guilty of thisRead More

The Truth is: I Don’t Know

Ever since Nicky graduated from High School, one of these questions seems to be on everyone’s lips: “What is Nicky doing now?”, “What are his plans?”, “Is he going to College?” or a variation of these. The truth is… I don’t know. As a parent of a child who is medically fragile (to say the least), I don’t know what my son’s plan is, or what he will do. He would like to do things, but on most days it’s a challenge just to drag through another painful day without trying too hard to think about the future. Planning for something like College seems impossible when I don’t know if he’ll even make it to next week. I canRead More

No Sick Days for Me & It’s Ok

I remember clearly being sick when I had a “regular job”. It was pretty simple, really. I would call in sick and I would stay in bed all day. I even remember with sadness when I left work when I started bleeding when I was 7 weeks pregnant back in late 1995-from there I went to the Doctor who did an ultrasound and could not detect a heartbeat and sent me home on bed rest. My employer at the time was extremely kind and told me to stay home “as long as I needed to”. I laid on the couch for days, not doing a thing. The bleeding kept getting worse, culminating in a miscarriage. This was 7Read More

Nicky’s Life Part 34

August 2007 – Nicky was 10 years old in this picture playing in the fancy fountains with Connor (almost 3) in front of the Royal Palace and Palazzo Madama of Turin, Italy. It was an unforgettable trip we took to celebrate my parent’s 50th anniversary. I saved money for years to make sure I could afford to go, it was mega-important to me. On this particular day we took Nicky to the Egyptian Museum and toured Palazzo Madama as well as taking some photos in front of the original 2000 years old Roman Empire entrance to the city which still has the statues standing and in good condition. Not many tourists know about Turin, so it’s never overlyRead More

What I Want Everyone To Know

I was recently asked the following question by a reporter: “What do you want others to know about genetic disorders and the challenges individuals who have them and their families face?” So I wanted to share my answer here: I think the foremost thing I would like people to know about EB in general is that this condition exists and it’s horrible. There is no sugar-coating EB or trying to make it worse than it is, we couldn’t imagine a worse condition, ever. The pain the patients go through, especially in the worse forms, is unimaginable. Awareness is key. Without awareness we have nothing. Without awareness we can’t hope to raise funds to find a cure. Then IRead More