Things Don’t Get Easier

From my book “Butterfly Child“: “For a long time I told myself that things would get easier. It was going to be easier once he sat up, or when he was out of diapers, or when he turned 10, but I had been duped. The wounds were bigger, nastier, took longer to heal; the limbs were longer, we needed more bandages, longer wound care, hands worse, more homework, and things were only going to get tougher.” I wrote this sentence in my book to illustrate how, as time went on and Nicky got older, some things got easier, while others got tougher. At 20, Nicky can tell me what hurts, where it hurts, how to make it better,Read More

I Won’t Be Less

I remember clearly this girl on the right. I was painfully shy. Painfully. So painfully so that in third grade, when asked a question about geography, I didn’t speak because I was afraid to be wrong. I wasn’t wrong, I had studied all day before, but when I was asked this question in front of the class, I froze. My shyness got me an F. I was mostly a quiet child not only because of my shyness, but also because I was taught by various teachers and other people in my life to be quiet. To be less sensitive. How many times my elementary teacher made fun of me for crying? I lost count. I was 11 years oldRead More

Our Unique Grief

There is a unique kind of grieving that special need parents live with every single day. Yes, we like to live our lives as normal as possible, but then, SLAM, something happens that reminds us how fragile our children’s lives really are. True enough, my Nicky is beating the odds, he’s very much alive and ready to fight and I am ever so grateful he is, especially since I have so many friends who have experienced the loss of their children, and since I have buried a child myself, I know exactly how that feels. I want to delay that horrible fate as much as possible, while continuing to hope for some kind of treatment to come along. ThatRead 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

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

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

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

How I Deal

So many things happened these past few weeks that made me wonder about a myriad of issues. I start every morning with a good dose of “positive”, “funny”, “loving” or “inspirational” images I post on my sleepingangel Facebook page. Why do I do that? Because it helps me start the day in a good way, remembering to keep the negativity away. There is always that “friend” that must post negative stuff, so I give them the benefit of the doubt a few times until I get fed up and unfollow them. I have no time for that crap. You have every right to post whatever you want on your wall, but I have every right to unfollow youRead More

The Parent’s Journey

I read a quote recently which came across a Special Need Parenting website that truly aggravated me. It stated that it was not the parent’s place to tell their child’s story, that the diagnosis was that child’s journey, not the parent’s. Needless to say, that quote received quite the amount of backlash, since most parents of chronically ill children’s lives are completely turned upside down and changed in ways hard to describe in a one-sentence answer. This is the reason why I wrote the book (Butterfly Child), which entails *my* journey, the journey from a parent’s perspective. I made sure never to speak for Nicky per se, and even so, I did read the entire book to him which heRead More