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 →

Sometimes, when I sit down and think about it, I forget that the kind of stuff we deal with on a daily basis isn’t normal for most people. I forget, because after 20 years, they are normal for us, and even though I have a healthy child to remind me of the opposite, I choose to just live my day without comparing. Do not let anyone tell you that is foolish to have hope. It’s what keeps me going. Hope is that little bitty light at the end of the tunnel that keeps you moving forward.  I will keep fighting for decent health-care, for women’s rights, for decency, for LOVE and reject hate at every cost. My secret weapon is Faith, Hope & Love. Nicky hates EB. Hates it. At times he’s absolutely livid with anger over his condition. It’s not often, mind, but it does happen. Nicky didn’t comeRead 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 →

Even with all this evidence on how much my wrapping is working, they are STILL telling me I wrap Nicky too much. I swear, it will never end. Isn’t prevention key? My job is to keep my head above water for Nicky’s sake, which can be an unsurmountable task at times.  God can and will give you more than you can handle, it’s up to us to decide what can wait and what cannot. Last night I came THIS CLOSE at crying myself to sleep. I simply don’t understand why the people I love the most must be in pain and struggle the hardest. I will never get it, and God better have an answer for me when I come through those pearly gates! No matter what happens in my life, I’ve always kept those rose sunglasses handy, I’ve always enjoyed finding the silver lining into everything, no matter howRead More →

For many years to come we survived on donated bandages or, worse, washed and re-used bandages. It’s heartbreaking for everyone to see my son not only suffering but deteriorating before our very eyes.  The death of my child changed me in ways I cannot ever explain nor express the monumental importance of. When you hear a bereaved mom mention the name of their child in heaven, just listen. I will continue to fight, just as all parents on this journey do. We will fight on all levels, with all the love we can muster, because our children deserve our best. Sometimes I wonder if my tiredness is not strictly physical but mental as well. Can anyone feel tired because their mind is? Post Views: 1,390Read More →

Life hands us raw deals, and we can either laugh or cry, and while I am not sitting here telling you I’ve never cried, nowadays I try my best to enjoy life, enjoy the little things, enjoy the moment, take it all in. I don’t intend to host a pity party by sharing my pain and struggles — by sharing, I think I help open minds to what Epidermolysis Bullosa looks like.  The problem with the scarred areas is that they are very fragile. There is a big difference in how much pressure I can put on areas of his skin that have never been wounded and chronic ones.  Those that have either Recessive Dystrophic EB or Junctional Herlitz EB bear the unimaginable cross of knowing that not only they have to constantly suffer, but eventually the condition will take their life, many times sooner rather than later. I’ve readRead More →

Don’t know what to say? Google “what to say to a special needs mom” or “what to say to a bereaved mom” and you will be inundated with amazing, perfect sentences you can add to your repertoire and make you look as the most amazing, empathetic person on the planet. Try it, seriously. You no longer need to abandon your friends and families when they need you, just Google what to say. You will be their hero forever. Nicky’s form of EB was one of the rarest, and as much as I admired and trusted his Doctors, I also knew that I – and Nicky once he was old enough to understand – had the final say in everything.  If I can leave you with any message today, just know that Empathy Matters. It really does.  It’s called empathy. It’s called listening, TRULY listening without feeling the need to compareRead More →