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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: 110Read 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 →

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The other day, for the umptheenth time, someone sent me a message telling me that… even though they knew nothing about EB, their “eczema” was healed through foods and supplements etc. I don’t even bother to respond anymore, I just delete it. To compare eczema to EB is preposterous. I like to keep my zen thinking that people should really learn about EB instead of giving me unsolicited advice. I laugh. That’s all I can do. I laugh. I made the above meme, as I’ve made hundred others for EB awareness simply because EB is chaotic, loud, very, very messy, and exhausting. EB is genetic, no amount of food, creams, supplements, herb or other will stop the blistering, make the wounds disappear and more. My son’s body does not know HOW to make the collagen, no supplement is going to make his body produce it. No food will make CollagenRead 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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I was worried about Nicky yesterday and I told him so. It seems as if lately he sleeps as much as 18 hours a day! He doesn’t do that every day (his normal is about 12), but he has done this at least 3 times this week-and he told me not to worry. He told me that he spent so much time in the hospital this year he’s enjoying the slumber without interruption in the cool, air conditioned room of his. Awww…. okay. He’s right, of course. Being at the hospital is surprisingly exhausting. The atmosphere is tense, the air is stale, people come and go at all hours and the fluorescent lights don’t help matters. It’s going to take a while for him to recoup and re-energize himself. Still, his wounds on his legs seem worse all of a sudden. His arms are not doing that well either. HeRead More →