“I no longer feel the need or want to keep living 😞😞 I don’t feel strong anymore…” That sentence, if ever uttered by Nicky, is my greatest fear. He has never said that, but he’s come close to it enough times to throw me in despair. It’s the type of emotional bleeding that occurs when a parent truly understands their child’s medical fragility. We know very well that the unexpected can and does happen, that our children are vulnerable. ItRead More →

I am a nurse every single day for my son and I don’t enjoy it one tiny little bit. There are days where EB just overwhelms me. Still. One would think that after nearly 22 years it would just get easier, but it’s just draining and relentless. Nicky’s at that age now where he should be living on his own or would soon, perhaps graduating from college, but he is everything but independent and will probably never be. EB takes aRead More →

As the mother of a child with a complex medical condition, I feel that there are some things everyone should know about what it’s like to parent this child, whether he or she is 1 or 21.  In my case, of course, as Nicky is getting older, things are getting more complicated. He’s less mobile, he has more issues, more doctors, etcetera. RDEB is a degenerative condition and the issues we may face are most likely different than what anotherRead More →

It’s that time of year where depression sets in. The time where “vacations” are over and it’s back to the old grind. Of course, the fact that Nicky is having the corneal abrasion from HELL doesn’t help at all. It’s the constant battles, every time you turn around, that exhaust me. I had someone ask me why Nicky “wakes up” with corneal abrasions since we sleep with our eyes closed. I know this is a valid question so I wantedRead More →

My son Nicky was diagnosed with Epidermolysis Bullosa (EB) 12 hours after his birth, a month later we received the official diagnosis of “Recessive Dystrophic”. Here are my top 6 things to know about Epidermolysis Bullosa. 1. Epidermolysis Bullosa is a genetic skin disorder. Epidermolysis Bullosa it’s an umbrella term for a group of genetic skin blistering disorders. The condition arises from genetic mutations present at birth, which can be inherited either recessively or dominantly. Different mutations cause the differentRead More →

“I have never had a day with no pain and it is almost torture to watch people do things that I know I can’t.” ~Sohana Collins (https://www.cure-eb.org/) This sweet and heartbreaking quote from a girl with EB touched me more than words can say. After I retweeted it, I asked Nicky if that’s how he felt too, assuming he would say something along the lines of “obviously”, but he said “No”. “No? What?” I was a little shocked to beRead More →

Worry seems to be a mantra for EB moms. We worry. Our heart sinks with every new passing. Myself, I try to cherish every day and not think about the future, it is unknown after all. Thinking positive is hard, but I do try. I keep telling myself: Nicky will make it, Nicky will make it… he will live to see a treatment that will improve his life drastically. It may be false hope, but the truth is, my heartRead More →

We hurt to depths that boggle the mind, but we know joy that others will never understand. At the beginning of our journey, we may not think we can do this, we may think we’re not good enough, not patient enough, not selfless enough, but we become the parent our child needs. Friends and family disappear, but those who choose to stay become part of our new world, and they are the most amazing, caring people we will ever know.Read More →