I often post updates on the Facebook Page for my son (https://www.facebook.com/NickyLivingWithEB/) about his struggles and our fights, but the fight over his g-tube lately was one for the books. I have learned over the years that I get more bees with honey, but sometimes insurance companies and the rest of them get me over the edge. That’s where my Italian psychotic bitch shows up, and let me tell you, I love her. Of course, being such a rare diseaseRead More →

I remember vividly being pregnant with my first baby, Alex. Finally my dream of becoming a mom was coming true. I waited an elated 9 months for his arrival, and on the day after he was due we found out he had died in utero. He was stillborn 2 days later. Seven months after that unthinkable loss I miscarried a baby girl at 8 weeks. Thirteen months after that I finally held Nicky. He was a bundle of warmth that feltRead More →

My son and I had two incredibly hectic days this week. We drove to Stanford one day for 6 hours, and the next day we were in the hospital all day where Nicky had surgery until 5pm, and then we took a 7 hour drive home-longer because of traffic. That trip was so exhausting for the both of us that we are still recuperating 3 days later. I wish I could say I can just rebound from things quickly, butRead More →

WHAT IS EPIDERMOLYSIS BULLOSA? Epidermolysis Bullosa is an umbrella term for inherited, genetic skin blistering conditions that vary greatly from mild to lethal. The three main forms are categorized under “simplex”, “junctional” and “dystrophic”. In recent years they also added a “kindler” form and an “autoimmune” form to the list. By “inherited” it means that some forms are dominantly inherited (the parent has it, and their child has a 50/50 chance of getting it) or the parents are “carriers”, whichRead More →

“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 →