I’ve been lucky. I come from a very loving family. My husband is amazing and a great dad. Even my ex is a truly caring dad. My kids are the most amazing, loving, compassionate people. I am so proud of the young men they have become. I like to think I have great taste in friends, as some have turned out to be impeccable human beings, but the past few years, it seems as if hate is everywhere. I don’tRead More →

What I am watching I have a confession to make. I never watched the original “Lost in Space“. They never aired it in Italy when I was a kid, so there’s that. I catch my husband watch an episode here and there but to me it just looks so cheesy it’s unwatchable. I find that certain shows don’t age well if you didn’t watch them as a kid. I could watch the Original Star Trek or even Space 1999 untilRead 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 →

September 2010 Connor had gotten a kitty for his birthday and the boys just loved her. They still do! She’s too heavy now for Nick to pick her up or hold her anymore (I need to put her on a diet, LOL), and she’s become a bit reclusive over the years, but she still takes the love if she’s in the mood. I wish she was more friendly! She’s so scared of everything and everyone. Oh well, maybe it’s timeRead More →

A recent visit to the ER for my son Nicky powerfully reminded me how much power we have, as parents of children with rare diseases, to control the situation. To control how we are treated. To make sure we are listened to. We are, after all, the experts on our kids! Nicky may be 21, but he’s still MY kid. Speaking up for my son, especially  if something doesn’t sit or seem right is now a way of life. No oneRead 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 beRead 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 →