I Chose Sanity

So… ever since the election I decided that my desire for sanity needed immediate precedence over the desire of being well-informed. Being well-informed nowadays, I found out, is almost impossible anyway. With the advent of fake news and the news biz in general being more interested in generating profit and viewership over reporting actual news, it seems to me that our society, at least in the US, is in serious decline. Nobody knows anything anymore. People believe everything they read or see on TV. I suppose I should resort at getting my news from sites like http://www.politifact.com/ or http://www.factcheck.org/ but it’s exhausting to keep up. It truly is. I have better things to do with my time than looking aroundRead More

Fighting EB Every Day is our “Normal”

As Nicky’s 20th Birthday came and went, I am reminded of so many moments in his life where things were dicey. When I really thought he wasn’t going to make it to his 8th birthday, let alone reach his twenties. When he was 5 years old, in fact, he took a bad fall, which denuded both his legs of skin from his knee to the ankle. His knees and ankles were already non-healing areas by then. After 2 years of trying everything under the sun to get his legs to heal, I was at my wit’s end. Not only his health was spiraling out of control as his infections were at an all time high, his spirits wereRead More

Blog Quotes Part 11

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. The past cannot be changed, it can only be accepted. Real friends heal, they really do. If Nicky’s existence has taught me anything is not to judge situations I’ve never been in. The only thing I can do is be there for that person with an ear to listen and arms to hug. It’s hard to have hope when there seems to be no light at the end of the tunnel, knowing that even if a light might be in our peripheral vision, it could very well be anRead More

Baby Nicky

I’ve been working “not exactly diligently” in digitizing all my old VHS & 8mm videos and it’s a tougher project to do that I initially realized. I would have wanted to be done by now but it’s become very hard. I am very far from being done. It’s not hard doing the digitizing per se, that part is very easy. I connect the video camera (or the old VHS player) to the computer, start my little program, then press play and voila’. I leave it to do the job for itself. I have a Mac & I use something called VIDBOX and it works very well. After I am done I upload the video to YouTube, making theRead More

Nicky’s Life Part 48

September 1997 – The Theme for Nicky’s nursery was Pooh as it’s painfully obvious! I love how I set up this photo in his crib with all the Pooh characters. And that smile… it just melts me all over… 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: 19

20 Years

In exactly 10 days Nicky will be 20 years old. I have to let it sink in because not only this is a long time for a child that deals with this severe of a form of this condition (and he’s stable at present), but make no mistake, my rainbow baby was surely precious and wanted and cared for in ways I am not yet sure I managed to ever master. Yes, I am still learning. Nicky didn’t come with an instruction manual, and since every child with EB is different, even if I had had a manual, I am not sure it would have helped much. Nicky is most certainly unique and I know my style ofRead More

Perseverance

I’ve been kind of “out of it” the past several days since the election. The day that followed I was in a daze. I cried and I couldn’t stop. The man that made fun of a disabled reporter was now president. What was I going to tell my disabled son? The man that hates immigrants was now president. I am an immigrant. But I am white, so I’m OK? Right? If I was “brown” I would not be, I would be garbage. I could go on. Health Care & Women’s Rights are at stake, including LGBT rights, provisions for climate change and sensible gun control and many other things I hold dear that should be a “given” inRead More

Blog Quotes Part 10

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. We all have bad days. I want to be able to vent my grief and frustrations without anyone making me feel guilty about them. I just want people to accept the fact that caregivers have feelings too and all we want is acceptance and understanding. EB is one of those conditions that is indifferent to race or gender, equally present in all populations on earth. Just because a condition is rare, that does not mean that people don’t suffer from it. There are millions of people that suffer fromRead More

Epidermolysis Bullosa is not a Life Choice. It’s Real & it’s Hard.

Last night, during a bandage change, I barely touched Nicky’s feet and he yelled in pain. I wasn’t touching a wound, mind you, I was simply “gently” feeling his skin. His feet nowadays are mostly healed, and they have been healed for sometime, they really look beautiful all in all, so I was a little perturbed. In truth, for the past several months – or years – Nicky won’t let me touch his feet at all. If there is a wound or a scab to clean or anything else he insists on cleaning it himself. I don’t mind at all, yes, please do it, ha ha. I asked him what is the matter with his feet though, andRead More

EB Awareness Week 2016

I know I am beating the drum of Epidermolysis Bullosa Awareness every single day, especially on my ebinfoworld.com facebook page, but this cause is very close to my heart and it really needs everyone’s attention. There are so many conditions on this planet, many of them rare, and it’s hard to get the word out often because our voice can drown in the sea of worthy causes. The rarity of some like EB, however, makes it very unlikely that enough money is raised to find for a cure. Let’s face it, investigating EB in not exactly an attractive proposition to giant companies who make money by alleviating human suffering. The more common the condition, the more money they make. ItRead More

October is Pregnancy & Infant Loss Awareness Month

I can’t let October go by without posting at least “something” regarding either my experience with Pregnancy Loss or at the very least offer my thoughts on the matter either on how I feel more than 2 decades after my loss or the state of Awareness. Am I and are we moving forward? My answer is YES. The other night I was watching this show called “This is us” and this is the clip that sent me over the edge….: I was a mess. A total and complete mess. Even after the show ended I could not stop sobbing. My 13 year old son Connor came up to me a little while later, and not knowing what IRead More

Nicky’s Life Part 47

August 1997 – Nicky and I on our way to my anniversary dinner…. Nicky looks so spiffy, but despite the smiles, behind the scenes, I was a mess. At this point I was taking Nicky to the Physical Therapist twice a week and she became sort of a confidant; I felt she was one of the few people that might have answers to a question I was constantly asking myself: ‘Is this normal?’ It’s just the nature of having a child with a disability and not having another child to compare him to. Sometime it was normal, but most often it wasn’t. I was determined to give my son a quality of life that was as high asRead More

Blog Quotes Part 9

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. Believe me when I tell you, never in a million years I could possibly exaggerate Nicky’s condition. I became the parent who hopes against hope despite a horrible diagnosis, the parent who jumps out of bed the moment the child calls you even if you were in deep sleep, the parent that wants to believe in miracles. As time went on, the difference between him and his peers only widened, and I started turning a blind eye to his peers. I could not compare, I wouldn’t. I refused to.Read More

Epidermolysis Bullosa by the Numbers

As EB Awareness week is approaching, I always hear the “numbers” of EB being floated around. One official website states the incidence of EB  is 1 out of every 20,000 births. Another official website states One in about 17,000 live births. Yet another official website states 1 in 50,000. The truth is, most likely nobody knows for “sure”. I am telling you this because I remember quite clearly a gal that was a waitress at an EB event who then went to the organizer to tell her afterwards that she thought she had EB, how her feet always blistered and nobody knew why. She later found out she indeed had EB. This happens because the genetics of EB are so uniqueRead More

Raise Your Standards

I am a very spiritual person. I grew up catholic and I have attended service at many different churches from many different denominations, mostly to satisfy my curiosity, so I am very well aware of how incredibly sensitive this issue of religion is. Your beliefs are important and they should never be belittled nor should you ever be questioned about them.  It’s because of this that I am just very surprised when people start “bragging” how they prayed, and their illness either vastly improved or even disappeared. Please don’t misunderstand me. I do not think it’s bad to be thankful, nor I think it’s impossible for any prayer to get unanswered. As a matter of fact, gratefulness isRead More

Nicky’s Life Part 46

March 2001 – I was thinking about this picture just the other day when we were driving back from Stanford and I was so happy to find it. Isn’t Nicky cute? “Casa De Fruta” used to be just a big fruit stand, now it’s a mini-amusement park, complete with a restaurant, rides and tons more, between Gilroy & the San Luis Reservoir. We almost always stop, it’s on our way! Nicky here was wearing his little soft slippers, back when he would have no problem wearing long pants and jackets. Things are very different now. 🙁 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: 17

Strength

If there is a sentence I hear a lot from family and friends in general is how “strong” I am. Before the stillbirth of my first baby, before the miscarriage, before Nicky’s birth, I somehow thought that strength had something to do with “grin and bear it”, or having somehow the ability to have no qualms or uncertainty of what to do or how to handle a variety of situations. But strength, I found out, has nothing to do with our outward projections of it, nothing to do with muscles, or not showing emotion, and everything to do with allowing ourselves to feel whatever needs to be felt at that moment, let it all out and then dealRead More

A Work In Progress

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 and medicine. At the core we’re all the same, we all want the same things. From the Quechua woman in Peru to the famous actor in Hollywood, we all want to love, to laugh, to dream, to eat and drink and a roof over our head. We’re more the same than we are different. There are people out there though, that cannot survive on their own,Read More

Nicky’s Life Part 45

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 was a rare occasion and I would only attempt at giving it to him if his throat looked like it could handle it. Our first trip to the ER for throwing up blood would soon start. I hate EB. 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: 22

Speechless

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 is truly something to be said about watching someone on TV feel what you felt. It’s hypnotizing. I am a very “visual” person anyway, so this movie was truly special for me. Fast forward a few years, and now we have Minnie portraying a Special Need Mom in the new TV show called “Speechless”, in which she is a take-charge mom to a teenage sonRead More

How to Be Kind to a Caregiver

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 his or her kids to the movies or out to the park for the afternoon Don’t compare their life or their loved one they are caring for with so-and-so Invite them out for coffee or lunch Ask them to tell you about their day Give them a day at the spa or mani/pedi Wash their car Never criticize any aspect of their lifeRead More

Nicky’s Life Part 44

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 do to entertain himself. Before long he got very good and to make sure he won I used to sit in 2nd place with a bunch of turtles and throw them at anyone that passed me so they could not beat him. 🙂 He would be soooo happy to win! Of course 15 years later, now NIcky is the master of all games.Read More

Blog Quotes Part 8

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 you still smiling?” he asked me. I admit I didn’t know how to answer. “Because I don’t want to cry” is what I told him. I don’t know a single EB mom who wouldn’t sell her soul to take their child’s pain away and would surely give up any strength, wisdom and courage gained through their journey to see that happen. Having aRead More

EB Parenting is not for sissies

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 that he would most likely not see his first birthday. I was in shock. Only 19 months earlier I had a baby that was stillborn and I just sat there, numb. Nicky is going to turn 20 years old in two months, and in these two decades I had to learn to be my son’s super-hero, while dodging bullets from all sides. Let’sRead More