New episode of Butterfly Talk ready to view! If you want to be able to help a friend or family member that has a child with special needs, I hope my super-important tips can help you! 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: 52Read More →

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: 278Read More →

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 →

Being the parent of a child with Epidermolysis Bullosa or any illness/condition is a perilous journey. The rarity of the condition makes it so we have to take any advice we receive from Doctors, Nurses and even other EB parents with a grain of salt. There are many forms of EB and each form has many subforms, so what works for one patient may not work for another. We are all dealing with something foreign and devastating in our own way. Often times the biggest cause of frustration is people that mean well, but say the wrong things, making us feel worse altogether. Here are my top 5 things you should never say to any parent with a Special Need Child: Give any sort of unsolicited advice, most especially avoid say the words “you should” or “you shouldn’t”. Seriously, NO!!! I beg you, please. Only give advice if it’s specificallyRead More →

Planning a year from now, a month from now or a week from now isn’t always an option. I make and break plans constantly because my child’s health can turn on a dime. We spend our days changing bandages, fiddling with medications, with needle pokes, blood draws & infusions and we measure milestones with wound healing and high red cell counts. One would think that after 20 years and 2 bankruptcies I would be used to this hellhole of a place where Insurance companies dictate the life and death of people, but, sorry, it still makes me mad. Quiet people live internally a lot. They write their feelings out. They also learn to listen, which is a wonderful quality. Look, I was not happy with the election results, but I care about my health too much to spend my time badmouthing, name calling or insulting others who don’t think theyRead More →

I am a nurse every single day for my son and I don’t enjoy it one tiny little bit. There are days where EB just overwhelms me. Still. One would think that after nearly 22 years it would just get easier, but it’s just draining and relentless. Nicky’s at that age now where he should be living on his own or would soon, perhaps graduating from college, but he is everything but independent and will probably never be. EB takes a toll on everything and everyone. Just recently between a persistent corneal abrasion that lasted weeks and severe stomach cramps which made his existence a miserable day to day ordeal, I was nearly suicidal, and I am not even overstating it. I guess people might think EB goes away or gets better. It doesn’t. It gets worse. I think at this point I got Nicky pretty much “stable”, his wounds areRead More →

As the mother of a child with a complex medical condition, I feel that there are some things everyone should know about what it’s like to parent this child, whether he or she is 1 or 21.  In my case, of course, as Nicky is getting older, things are getting more complicated. He’s less mobile, he has more issues, more doctors, etcetera. RDEB is a degenerative condition and the issues we may face are most likely different than what another family may encounter, but we all have similar wishes as far as how we’d like to be treated and what we’d like everyone to know about our journey. These are the most important ones to me: 1. I am not ignoring you. I try to respond to questions or chats promptly, but sometimes it’s simply impossible. When Nicky calls me I run to help him. He knows not to call forRead More →