Planning a year from now, a month from now or a week from now isn’t always an option. I make and break plans constantly because my child’s health can turn on a dime. We spend our days changing bandages, fiddling with medications, with needle pokes, blood draws & infusions and we measure milestones with wound healing and high red cell counts. One would think that after 20 years and 2 bankruptcies I would be used to this hellhole of a place where Insurance companies dictate the life and death of people, but, sorry, it still makes me mad. Quiet people live internally a lot. They write their feelings out. They also learn to listen, which is a wonderful quality. Look, I was not happy with the election results, but I care about my health too much to spend my time badmouthing, name calling or insulting others who don’t think theyRead More →

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 →

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 →

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 →

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 →