It’s EB Awareness week! Every year from October 25 to 31st (the last week of October) is reserved to help raise awareness for Epidermolysis Bullosa, my son’s rare skin disorder. Here’s 10 things this EB mom wants you to know… 1. Yes, it might looks like we have it all under control, and most likely it is. That doesn’t mean we wouldn’t like some help. Even if that just means a kind word. We appreciate those more than you know! 2. Taking Nicky anywhere is very hard. We are often invited to places or events that are hard to get to for him. We wish people would visit us more, is all. I understand this is hard with COVID, but this was true even beforehand and will be true after. 3. We find ways to be happy. It may not be what looks like happiness to many, but we’ve figuredRead More →

New episode of Butterfly Talk ready to view! In this episode I encourage all Mamas out there to take care of yourselves!! This includes Nutrition, Exercise, Sleep, Pamper Yourself and Your Mental health is also super-important!!! Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 126Read More →

I came across this quote a while back and it kinda just “hit me” in the gut. “The most destructive thing I’ve ever done is believe someone else’s opinion of me” I’ve been doing a lot of thinking about this quote… How many times, in our lives, people put us down and bully us without knowing the full story? How many times have we been compared to others and we are told we do not “measure up” to them? As if living is a competition on who is more educated, more beautiful, or who makes more money? I’ve learned along the way that the most wonderful people I’ve ever met are not the most successful, nor the most educated. The most wonderful people are those who are caring and compassionate, who have empathy and know that a kind word goes a long way. You know, those people that know whenRead More →

New episode of Butterfly Talk ready to view! In this episode I talk about depression. Special Needs moms cope with long-time depression. This ongoing type of depression is very different from other forms of depression…Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 373Read More →

New episode of Butterfly Talk ready to view! In this episode I talk about coping strategies for Special Need Families and also for those stuck at home due to COVID-19.Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Post Views: 321Read More →

It is my sincerest hope that now that people are experiencing what I’ve experienced for a couple of decades being “stuck at home” with my son, they will no longer say or imply insensitive things to me such as “you’re so lucky”, or believe is a “luxury” or “must be FUN”. The truth is, it’s not a “vacation” not to be able to go to work and it certainly has made me feel like a failure over the years for not being able to have a career. I even had people say I must be “lazy”. Lazy? Let me tell you how “lazy” I’ve been in my life. By the time I was 24 years old I was the manager of a Domino’s Pizza store and had 30 people “under” me, with dreams of becoming a franchisee. I would end up winning awards and managing various stores successfully. I evenRead More →

I was thinking this morning about my conversation with Nicky that I had a few years ago while we were changing bandages… I told him how hard it was to wrap his wrist and that if only he could try to straighten it once a day it would not be so ‘bent’ right now. I know how little PT he needs each day for things not to go to the point of no return and he started to cry. When he cries he can’t speak, so he wrote down for me all his feelings.The bottom line was that he did not want me to give up on him if he did not want to do something that brought him pain. That just about KILLED me.“Giving up on you” I told him “As if that it’s ever going to happen”? Life with EB. It sucks so bad… It’s hard to beRead More →