Just recently the EB community lost two RDEB teenage souls and my heart broke. This is the same exact diagnose as my son’s, so when this happens I always wonder when will that happen for him. Tomorrow? Next year? 5? 10? The future is scary. It’s unthinkable. It’s something I cannot think about. The only thing I can do is hug him, kiss him, love him. To me, however, losing him, would be losing child #2. Child #2 that I would have to bury, and that’s probably why over the years I’ve become such a Mama Bear, someone who will fight tooth and nail over his care and over people who relentlessly judge me about every little tiny thing I do to care for him. Forgive me for wanting to delay burying my second son as long as humanly possible! If I am doing something in particular that perhaps otherRead 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: 324Read More →

November 2014 – What an awesome memory!! We met Nick Vujicic in Ventura during one of his events and it was amazing. Nick had invited Nicky after he saw him on a news piece. What an inspiration! More of Nicky’s life in the book: http://www.butterflychildamothersjourney.com/ Post Views: 348Read More →

It’s been a while since I updated everyone on Nicky’s health. So, here I go. Because of the COVID-19 all kinds of appointments were cancelled, but Nicky does have an iron/blood infusion in early July and an esophageal dilatation on August 24th, so he does have some stuff happening soon. We did have a couple of “virtual” appointments and a couple of “phone” appointments which were interesting to say the least! Nicky even attended a few sessions of Camp Wonder online since Camp itself was cancelled. Boo. Nicky missed camp last year because he was in the hospital, so that made it two years in a row that he missed Camp. He was not happy about it, but everything seems to be cancelled this year. The major issue he has right now is indeed throat problems, he cannot swallow his own saliva at times and it’s really hard to goRead 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: 302Read More →

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 →

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: 249Read More →