What does having a “rare” member of the family means for our whole family? Rare means being scared. Nicky is 22 years old and I still check if he’s still breathing each and every morning. That magnitude of worry is overwhelming at times. I live his condition even though I do not have it. Our whole family does. Rare means that we have a lot of expenditures that the average family will never have. There will also be things, sometimes expensive things, that we purchase to try because we have hope in our hearts that something might make a difference. When it’s rare, nobody can say for sure what works and what doesn’t, and every patient is different. Rare means driving or flying far and wide to see Doctors that are at least familiar with the condition or meet other families. It’s disheartening when local Doctors, of any kind, refuseRead 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 →

Follow my blog with Bloglovin Rare Disease Day in February 28th this year! Nicky was featured on the Global Genes website back in 2014. As always, we are very open to share our story to gain awareness about Epidermolysis Bullosa. I can’t speak for other parents of kids with EB, let alone parents of kids with other disabilities, but I welcome questions about Nicky. I want to help shape the perception that anyone might have about people with disabilities. I want them to know there is no shame in asking questions. I would much rather explain Nicky’s unique challenges in a way that is positive instead of giving way to the silence and misconceptions. Yes, I am perfectly aware that Nicky is 21 and an adult, but he wants me to continue to speak for him because he feels comfortable that I have his best interest at heart and IRead More →

Nowadays, everytime I turn around, I hear something on the news on how the life of my child, once again, is an afterthought. The latest one is how the new tax plan passed unanimously by the GOP until the last minute didn’t have the ability to deduct medical expenses. Maybe, for most people, being able to deduct medical expenses is not an issue whatsoever, but I am glad that pressure from the disability community got them to open their eyes. The fight is not over, as there are other things at stake. By reducing revenue by at least $1.5 trillion and increasing the deficit, the “Tax Cuts and Jobs Act” increases the pressure to cut Social Security & Medicaid (programs the GOP stated are “next” on their agenda), which are critical to the lives of people with disabilities. Barf. I don’t normally engage in political discourse, even though I followRead More →