It’s often a full time job caring for a child who is medically fragile. We are not only parents; we become nurses, therapists, chauffeurs, companions and more. For some of us, the needs of our child are so time consuming that working outside of the home becomes impossible and impractical. Thankfully, certain cities, counties or/and states realize this and help. Many children with disabilities receive support, and as their parents it is our responsibility to fill out the mountains of paperwork and jumping through the bureaucratic hoops to get them services, and sometimes it’s hard to even find the support. I wrote this in my book Butterfly Child: It is amazing to me how remarkably difficult it is to locate the services that do exist. Hunting for resources can be an experience comparable to being in a labyrinth. Here I was, thinking California didn’t care about the disabled, and IRead More →

“I no longer feel the need or want to keep living 😞😞 I don’t feel strong anymore…” That sentence, if ever uttered by Nicky, is my greatest fear. He has never said that, but he’s come close to it enough times to throw me in despair. It’s the type of emotional bleeding that occurs when a parent truly understands their child’s medical fragility. We know very well that the unexpected can and does happen, that our children are vulnerable. It is a grieving awareness, an in-your-face understanding of a bitter and unimaginable reality. All I ever wanted was for Nicky to be happy. Being happy though, in my book, it would mean that he’s in the least pain as possible, and lately that is simply not happening. It used to be that I craved for Nicky to get some sort of interaction outside these four walls. I thought that wouldRead More →

When my son was born there were no research trials, no further treatment of any kind. No pills, medications or hopes to be had. No one can prepare you for having a rare child. It’s a lonely place to be. I am a special needs parent. I got this. When I feel grief wash over me, when I am tired of fighting, when I feel isolated or exhausted, I can almost hear another special need mom telling me “you got this”. Some people are just toxic. Don’t feel guilty for taking them out of your life. If they don’t care about you enough to return a message or say something nice and only spew hate, let them go. You’ll be better for it. So much in life is out of our control. If there is nothing I can do to remedy the situation, giving myself a heart attack solves nothing.Read More →

The contradiction of it all is that parents of special need children find their strength not truly in themselves, but through their love for their child. If this election cycle has taught me anything is how to raise my standards. I see people go so low it’s disgraceful. If any of us are going to be able to raise above and become better versions of ourselves, the work is within.  My tear ducts spontaneously go on overdrive when I remember that beautiful, horrible day that I held my stillborn baby. Mothers of stillborn babies like myself don’t want anything crazy, just for everyone to recognize this as the profound loss that it is. I can go most days without a single thought of Alex, but this unspeakable loss is “there”, woven in my psyche in ways impossible to accurately describe. Many of the things I do to keep Nicky healthyRead More →

Strength doesn’t really comes from anything supernatural, it comes out of despair and heartbreak. I assume it takes a LOT to shock a firefighter, but we managed to shock them that day. EB shocks people, it really does.  Strength has everything to do with allowing ourselves to feel whatever needs to be felt at that moment, let it all out and then deal with it. As a special need mom, I’ve had experiences where I had to fight like an insane person to protect my child. I had to advocate for my son with the school districts, rude teachers, bus drivers and clueless strangers, let alone nurses and Doctors that did not know anything about EB at all but told me everything I was doing wrong. As the years have moved on and EB has taken a toll on his body, just moving has become a source of great stress.Read More →

As parents, we always want to encourage our children to be able to stand up for themselves. Anytime I feel I may not be doing a good job at this considering how much I advocate for my Nicky, all I have to do is look at my healthy son, now 14 years old. He ROCKS! He’s totally willing and able to stand up for himself. He often asks me how to deal with so-and-so and comes home from school telling me how he successfully dealt with whatever situation he was confronted with. Nicky however, is a different story. Raising a child with a rare disease is profoundly confusing and complicated. With something like Epidermolysis Bullosa, we are forced to learn all about wound management, take crash courses in everything that has to do with their skin, and learn how to advocate for medical care, among becoming an insurance expert. MostRead More →

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 deal with it. When I accidentally stepped on Nicky’s hand when he was 10 months old crawling behind me, ripping the entire skin off his hand, the last thing I was is strong.Read More →