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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 →

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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: 334Read More →

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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: 307Read 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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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 →

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Last night, during a bandage change, I barely touched Nicky’s feet and he yelled in pain. I wasn’t touching a wound, mind you, I was simply “gently” feeling his skin. His feet nowadays are mostly healed, and they have been healed for sometime, they really look beautiful all in all, so I was a little perturbed. In truth, for the past several months – or years – Nicky won’t let me touch his feet at all. If there is a wound or a scab to clean or anything else he insists on cleaning it himself. I don’t mind at all, yes, please do it, ha ha. I asked him what is the matter with his feet though, and he told me they are “incredibly” sensitive. Just touching them is painful. Often he gets a blister just transferring when he puts some weight on it. Another area on his body isRead More →

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Every person in the world has known heartache and suffering. Sometimes I think about the children with my son’s condition that live in third world countries, or countries like Syria, ravaged by war. There are so many people on our beloved planet that do not have the basic necessities, water, food, clothing, let alone bandages and medicine. At the core we’re all the same, we all want the same things. From the Quechua woman in Peru to the famous actor in Hollywood, we all want to love, to laugh, to dream, to eat and drink and a roof over our head. We’re more the same than we are different. There are people out there though, that cannot survive on their own, that need that little extra help. Sometimes more than a little. And it’s not just the fact that they need us to help them with the most basic tasks, they also needRead More →

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I don’t know if it’s because Nicky is getting older, EB is getting restless, I am getting older or what is the culprit, but I feel as if lately my fuse has shortened quite a bit. Of course it might also have to do with the election and my unrelenting disgust at all the lies being told by one Pinocchio who flip flops every two minutes depending on who is listening. At least I can look forward to that being over in a month. All I know is that I had to stop drinking wine, or my occasional bottle of Vodka because I felt I could not cope changing my son’s bandages without it. Only now I feel like I am going to explode. What am I going to do? I bought some sugar free lemonade stuff that ‘tastes’ like Margaritas, Appletini and others, without the buzz. So far IRead More →