Enjoy Life

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. The other day I filled a suitcase with Nicky’s bandages. Not all bandages, mind you, just “some”… well, most. I still need to add somewhere all his g-tube supplies (food, bags, pump, extensions etc), medications and other bandages… and of course, clothes and miscellaneous for all three of us plus all the gifts for my family I bought on the other two suitcases.Read More

Blog Quotes Part 5

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 inherited or how they manifest themselves. Back in the late 1800s/early 1900s, when the words Epidermolysis Bullosa first appeared, the Doctors told patients they had EB if they blistered. It’s like if Doctors bunched up together all conditions which feature rashes (eczema, psoriasis, rosacea or shingles) or conditions that feature the progressive deterioration of nerve cells (Tay-Sacks Disease, Parkinson’s & ALS). It’s extremelyRead More

Thank You George R. R. Martin!

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 is different that is cast in a show is there as a “token”, so-to-speak. Having a “different” child has made me very sensitive to this subject so when I sat down to watch the premiere I was impressed immediately when I saw the scene of Tyrion talking with Jon Snow: Tyrion: Let me give you some advice bastard. Never forget what you are. TheRead More

Nicky’s Life Part 42

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 & Light,   Post Views: 127

Anemia with RDEB

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 years old that he was tested for iron levels and we found out his levels were so low they were “borderline lethal”. Talk about scary. It was then that we started a routine of giving him iron and blood infusions that continues ’till this day. Why blood? Because over time his blood loses the ability to absorb iron so by giving him a freshRead More

Blog Quotes Part 4

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 best to own the pain so it does not own me. I kept my personal bankruptcy, which resulted from our insurance company refusing to pay for supplies and other things a secret because I was so incredibly embarrassed and mortified about it. But the secret is out. I am not longer embarrassed or mortified, I am mad as hell. Just as every personRead More

Freedom From Suffering

I cling to the hope that someday in the not so distant future I will know what it means to see my son being free from the daily suffering he endures. In the meantime the only thing I can do is continue to spread awareness. I am not a millionaire nor a scientist. I can’t donate oodles of money for research and I also do not have either the skill nor the expertise to research how to actually find a cure for EB, so I must support those that do and continue my quest in getting this disorder known. The truth of the matter is that with enough money a cure will be found. There are now enoughRead More

Nicky’s Life Part 41

October 2010 – Nicky here was almost 14 years old when we went to Minnesota for a counsel for a Bone Marrow Transplant. My darling boy was just out of anesthesia here while we were waiting for our ride to take us back to the hotel. They had just taken some biopsies and did blood work to determine eligibility.  In the end Nicky decided against it for many reasons, too many to enumerate here, but I had to take him there to “explore” and get all the information he needed first hand so he could make an educated decision himself. He was old enough at this point to decide to do or not to do something this invasiveRead More

Channeling Alex

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 that have been good, even great, but no episodic television ever tackled this in a poignant way and with the attention that it frankly deserves. 100 babies are stillborn every single day in the United States alone! Can these babies and their mothers get some respect? They did in this episode, and it was fantastic. Amazing. Breathtaking. Caitriona Balfe totally nailed it. AndRead More

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: 188

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: 124

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: 163

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