My son and I had two incredibly hectic days this week. We drove to Stanford one day for 6 hours, and the next day we were in the hospital all day where Nicky had surgery until 5pm, and then we took a 7 hour drive home-longer because of traffic. That trip was so exhausting for the both of us that we are still recuperating 3 days later. I wish I could say I can just rebound from things quickly, but at 54, there is no such thing. Nicky is still in pain from the surgery but he’s doing much better. Nicky humbles me every single day. Just before surgery he realized he had a blister in his throat. He coughed and threw up for 2 hours until he happily told me he popped the blister and he threw up the ‘skin’ of it. Here’s to my son, the hero… heRead More →

Yet, here we are. And I still have some dwindling hope against all odds, because it’s hard to hope when your child pushes against a very strong current. My hopes and dreams I have for my child die a little more each day as I watch him struggle to just survive. I surprise myself at the kind of person I’ve become. I literally explode when people treat my son with any degree of disrespect because he does not deserve it. He’s the sweetest boy, ever. I may not know much, but I am an expert in my child’s needs, and you can bet on that. One of the nasty side effects of RDEB is that the scarring does not only appear on the outside of the body, but also in mucosal surfaces, such as the eyes, mouth, throat and esophagus. All you have to do is look at cultures thatRead More →

Parenting a child with a life-threatening condition teaches you that life is precious. Life needs to be lived one day at a time. If I learned to smile despite the yearning to cry, it’s because my new “normal” was to make him smile. I am done being told what to believe, what to be afraid of, who to trust, what to think and who to hate. Why is RDEB medically fragile? Mostly because of the open wounds and the consequences of having non-healing 2nd degree burn-like wounds, which can vary and can be extremely damaging, even lethal. The skin, after all, is the largest organ of the body and it affects everything he does. I realize that even people we know and love struggle to fully comprehend what Nicky’s medical fragility truly means. I regularly receive well-intentioned questions about whether Nicky will ever get better. The short answer is no.Read More →

It occurs to me sometimes that when people in general refer to Nicky or any child with EB as “medically fragile”, they may not truly understand what that means. And the truth is that the definition varies widely not only depending by the form of EB but also from patient to patient. Since my only “specialization” is with Nicky himself, I will attempt to clarify what that means to Nicky being called “medically fragile”, which may not be far from describing the experience of other RDEB families. Let’s start with the acronym itself before I go any further to explain why this condition is so rare: RDEB = Recessive Dystrophic Epidermolysis Bullosa. It is called “Recessive” because it’s inherited recessively, meaning both parents are “carriers” of the condition. And even when this is the case, there is only 1 in 4 chances of a baby being born with RDEB, as the babyRead More →

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 cannot even go to the movies, and I see a big gap in consideration for those whose life is tremendously tougher. There is nothing I can do about it, but I see it,Read More →

… 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’t praise enough both airlines, they were ready and willing to help. We were always the first to board and the last to leave. On one occasion, while entering the flight from TurinRead More →

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 fresh injection of good blood helps his body re-absorb iron as it should. I was told by many Doctors that the reason why RDEB patients are anemic was because of the “blood loss”Read More →

If there was one thing I’ve been criticized endlessly for, and for which I’ve stood my ground over and over again, is my need to bandage Nicky. I wrote extensively about it in my book (Butterfly Child), but I feel the need to make my feelings more “public”, so to speak, because, once again, I was attacked for it, merciless. I am not sure why people I do not know, who very obviously (having met them or seen their pics) are dealing with a different subtype or subform of EB feel the need to go to the extent of calling me a “bad”, “horrific” or a “crazy mother” and why they feel the need to “tell me what to do”, as if, after 19 years of inspecting every inch of Nicky’s skin and trying all sorts of things to improve things, apparently I must be an idiot in their view. When I tellRead More →

I don’t often talk about Connor in my blogs, but I will today, among other things I just need to get off my chest in the nicest way possible. 😛 I truly feel that the unsung heroes in the special need family are the siblings. Because Connor was born after Nicky, he never had to learn to accept EB, he just “knew” at a young age that Nicky was fragile and he naturally touched him gently even as a toddler. As he grew older he even started being his little servant, not minding at all when Nicky would ask him to get water or get him whatever he needed and never resented him. Connor is now 12, and for a while now he’s developed a love-hate relationship with his brother. So much so that if you ask Nicky if there is something or someone that makes him mad, the only answer,Read More →