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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: 109Read More →

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What I am watching I must admit… I am not watching many “new” shows (to me) lately. I’ve been mostly watching “new” seasons of shows I love, such as Outlander, Call the Midwife, Star Trek Discovery & When Calls the Heart. However, there is always something new that is amazing that I must talk about… so… here we go! If there was one show that I was extremely excited to watch it’s Star Trek Picard! Both my sisters and I have a kind of love affair with Star Trek altogether, so to see a “continuation” of “The Next Generation” we were all in! Of course this show, along with all other Treks is on CBS All Access, so I had to subscribe. Ugh! Anyhoo… what can I say about Picard? It didn’t disappoint in the least. I love all the guest stars from other treks and from TNG and theRead More →

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Butterfly Talk is back! I used to have the “Butterfly Talk” podcast a while back, where I mostly interviewed people form the EB community (https://www.blogtalkradio.com/butterflytalk)…This new version is a YouTube show where I will talk mom to mom about different aspects of coping and celebrating our amazing kids. It will be once or Twice a month from now on. Post Views: 117Read More →

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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 →

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RDEB gets worse with age. It really does. Not all forms of EB get worse with age, but Recessive Dystrophic Epidermolysis Bullosa definitely does. I try my best to be upbeat and positive, … to smile… “Nicky’s going to beat this”, yadda yadda, then on some days like yesterday, all I want to is disappear. It was a low I do not wish upon anyone. When your son tells you he wants to “give up” it’s a hard pill to swallow. Today I dust myself off, get up, and try to be positive all over again. My son needs “happy” me. I do try. Nicky overall is hanging in there. He has some worrisome wounds, a throat dilatation that he needs but cannot get due to COVID-19, and the usual daily wound and bandage change routine that drives me up the wall because I have to witness my son cryRead More →

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Haven’t written in a while. 3 months to be exact. This new year started and it knocked me out cold. At first it was Nicky’s wounds. They were BAD. The word “bad” doesn’t even give it justice, they were ATROCIOUS! So, I spent a great deal of time researching, googling, I couldn’t think of anything else but help my son. Then Connor started swimming, so I was his Taxi to school, to swim, to karate etc and I decided I was going to practice the piano every day while I was waiting to pick him up. I put all my focus on that. I had fun, but it was getting hard. When the hands do very different things it’s just… aarghhh. I have to practice the same piece a thousand times and I still can’t get it right. So, now I took a break from it. Will pick it backRead More →