A Sense Of Purpose

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. He would be so excited to eat a fresh cupcake, and I would make sure I would make some kind of frosting of his liking and would also make a hole in the cupcake for him to get as much frosting in there as possible so he could eat it. His favorite show is Top Chef or any of those Baking Championships! We wereRead More

Blog Quotes Part 7

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 you’re sorry. Laugh until you cry and Love with all your heart. When you see someone suffering, don’t think for a minute that their life has no value, that their life does not matter. Because it does. So many well-wishers often tell us they hope he’ll be OK soon. They truth is, RDEB is degenerative. It gets worse and worse with age. HeRead More

Nicky’s Life Part 43

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 time teaching Nicky to walk and just loving him and would follow him around everywhere. Til this day he’s extremely fond of him even though he does not see him often and was thrilled to see him this past summer. My dad is 85 and is still one of the most amazing human beings I ever met and I am sincerely humbled toRead More

Throw Kindness Around Like Confetti

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 (my favorite mode of communication), but aside that… calling… ugh. It’s like pulling teeth. I dread it like nothing else. I didn’t start to isolate myself willingly, it was a process. At first it was others who would say the most insensitive things to me, leading me to not wanting to call or email them. Not having anyone to talk to that couldRead More

Living in Fear?

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 are somewhat… how shall I say this? A bit egotistical. Everyone is out to “get them”. Just this morning I read the news of a 16 year old boy with RDEB like Nicky that passed away. Let me tell you something. It would take a LOT for me to take the advice of a newscast full of notions of fear, anger and hatred,Read More

It’s Been a Rough Week

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 have our “stops”, our routines. I’ve come to know certain rest areas like the back of my hand, and certain truck stops are very cool and my faves. We love stopping at Casa De Fruta, or Bravo Farms, we know Harris Ranch is close when we smell the cow stench, and I always stop at the San Luis Reservoir to take a photoRead More

Blog Quotes Part 6

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 hated. I suppose in this life we need to recognize who cares about us and make sure to spend time with them. Anyone that feels these kids aren’t heroes, I don’t know who their heroes are… It goes without saying that if I had a dollar for every random treatment for EB people have tried to sell me I would be aRead More

Confessions of a Tired Mom

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 behind his computer, Nicky can do anything and everything he could never do in real life. Online Gaming and watching videos is part if not his entire life, and in this little world of his, he’s strong, free, he is a warrior, a chef, anything his mind can imagine. This is how he survives. He just doesn’t think about EB. His computer isRead More

I Will Never “Get Over It”

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 somewhat canned statements that pretty much tell us to stop talking about it. I could not forget holding my dead newborn if I tried, so to tell me his life was so unimportant that he should be forgotten it’s a horrible thing to say, no matter how well meaning or kind you tried to be while saying. It cannot be done, plain and simple.Read More

Healing

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 how low I felt. The lowest low one can ever imagine. I can’t help but feel that special need parents, as a community, don’t get enough attention nor respect in that regard. Nobody can ever say we don’t make sacrifices for our kids! I see family members dropping off their kids for weeks, even months to grandparents or other relatives, while we cannotRead More

It’s All About Family

… 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 the trip was rough on Nicky, he’s glad he went. The flights we took to get there were from Los Angeles to Paris for 11 hours and then Paris to Turin for 90 minutes with Air France, and coming back we took Alitalia from Turin to Rome for less than an hour,  and then Rome to Los Angeles for 12.5 hours. I can’tRead More

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: 18

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