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 →

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 →

Nicky’s inner strength is something I deeply admire. There are times that he still surprises me with his wit, the way he thinks and the way he handles things. He’s such a loving, deeply interesting boy for those that care enough and are lucky enough to get to know him. He suffers greatly as well though, and that fact can never be ignored. I took the following pictures this past month to give everyone a small glimpse of what his skin looks like under the bandages. He’s part of the SD -101 cream trial (http://ebstudy.com/) so if you think his wounds look better, it’s because they do. This is his right arm. It’s looking fantastic. I know, I know, it still looks painful, but considering how it looked like before, say a year ago, there is a big difference. This is his lower back. This area is harder to wrap becauseRead 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 →