If there was one thing I’d want everyone to know it’s to please be aware that parents of special kids, especially those with lethal conditions, are hurting. Badly. So, when you see a parent pushing a child in a wheelchair at the grocery store or at Target, send them a smile, a kind word, anything. You will make their day. I will continue to research methods, oils, trails and anything else, as I must because Nicky needs me to be strong and persevere to give him strength. Often times I know I end up acting like his buffer for what lies ahead in his life, yet I know strength is the best gift I can give him. Hope is huge, it helps us moving forward, and if it’s wrong to hope, then so be it. I learned that negative opinions have more to do from the person giving them thanRead 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 →

I decided long ago to enjoy life for what it is, not for what I’d like it to be. People look at me and see the “together” image I’m trying so hard to portray. Maybe I hide it so well because I am so used to it. With Nicky, we’re not dealing with a fixable problem, one that we have the hope of treating and moving on. This is our life, 24/7 and for the foreseeable future unless a cure comes or a treatment is found to lessen the blistering. I wish I could say I was being dramatic when I say that Nicky’s medical conditions is serious. very serious. My entire life revolves around Nicky’s health and well being. People don’t choose the color of their skin, their gender, their disability, sexual orientation or the circumstances of how they were born. Rising above is not easy when society atRead 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 →

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: 1,757Read More →