My son has made me a better person. No lie, I used to be the girl who slammed doors and threw things. It’s quite embarrassing to think about that now, but having a child with special needs has taught me to have an immense amount of patience. Nicky has taught me that the only person I hurt when I go through those fits of rage is ME. Neurologists claim that every time you resist acting on your anger, you’re actually rewiring your brain to be calmer and more loving. The law of attraction further states that energy attracts energy. This means that anger attracts anger, greed attracts greed, hate attracts hate and love attracts love.  Therefore, the world of an angry person is filled with angry people, the world of a greedy person is filled with greedy people, and a loving person lives in a world of loving people. Because of thisRead More →

New episode of Butterfly Talk ready to view! Today I am sharing what are my favorite “Special Needs Parenting” Movies, plus I share which movies are available to watch specifically about EB. 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: 194Read More →

A couple of weeks ago my family got devastating news. My sister, her husband, and our 88 year old aunt all got diagnosed with COVID-19. We do not know how any of them got it, we are thinking perhaps it was from my aunt’s dentist that was asymptomatic, but it almost no longer matters. My sister is mostly okay, my BIL a little worse, but my aunt within a few days was in the hospital and later died. She was okay beforehand. She was never someone in great health, but did not have any respiratory problems of any kind. Her heart gave out because her lungs could not give it and other organs enough oxygen. I was already very careful before her death, I always wore my mask and use disinfectant gel often when I am out and about, which is rare. Now though, I wear 2 masks. One N95Read More →

New episode of Butterfly Talk ready to view! It’s EB Awareness Week! My guest today is Jodie Gillon, who is the VP of Patient Advocacy and Clinical Affairs for Abeona Therapeutics and EB-101. To Enroll in EB-101: https://www.abeonatherapeutics.com/cl… 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: 275Read More →

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! October 15th is Pregnancy and Infant Loss Awareness Day (as a whole, the month of October is also). Why this day is so important to me and why it’s linked to EB Awareness. My story and several tips on coping. 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: 233Read 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: 214Read More →

Just yesterday Model/Author Chrissy Teigen posted something on her Instagram account that blew me away. Her loss. Her Pregnancy Loss. The pictures were so devastating to look at, not because of the images per se, but for the memories they brought back in my mind from my loss, long ago. I don’t think celebrities really know how important it is to share their grief with all of us. Grief sucks. To lose a baby sucks. We, as humans, have a need to not feel alone. I noticed that in the past 24 hours since Chrissy’s loss, a few celebrities have came forward, such as Kate Beckinsale, and shared their loss as well. I have never been so proud and so touched. There was a point that I started sobbing so hard, I felt compelled to thank Chrissy for posting about her loss because when I lost Alex in March 1995,Read More →

New episode of Butterfly Talk ready to view! In this episode I talk about the Healing Power of Humor. I’ve used it a lot with Nicky and also my husband. We try to laugh as much as we can. It helps!! 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: 215Read More →