I’ve been kind of “out of it” the past several days since the election. The day that followed I was in a daze. I cried and I couldn’t stop. The man that made fun of a disabled reporter was now president. What was I going to tell my disabled son? The man that hates immigrants was now president. I am an immigrant. But I am white, so I’m OK? Right? If I was “brown” I would not be, I would be garbage. I could go on. Health Care & Women’s Rights are at stake, including LGBT rights, provisions for climate change and sensible gun control and many other things I hold dear that should be a “given” in this country that claims to be so “superior”, but it is not. I have an endless list of reasons why I didn’t want this man to be President. This man that is nowRead More →

It seems to me that every time I turn on the news lately there is someone telling me I should fear something. I ought to fear this, be angry at that and hate the other. I also noticed that the people that buy into this way of thinking are extremely depressed, suffer from anxiety or are somewhat… how shall I say this? A bit egotistical. Everyone is out to “get them”. Just this morning I read the news of a 16 year old boy with RDEB like Nicky that passed away. Let me tell you something. It would take a LOT for me to take the advice of a newscast full of notions of fear, anger and hatred, when the scariest thing that could ever happen to me is staring in my face day in and day out. I refuse this notion. If there is anything that my children haveRead More →

When I was a 15 years old, in late 1979, I started a diary that changed my life. I was a very shy teenager, I had friends, but I was neither popular, nor confident, so I used this medium to vent in good ways and bad ways and it helped me understand myself. Let’s face it, being a teenager is hard. I see it daily with my 12 year old and he’s not even a teenager yet. My diary changed my life for many reasons; being able to release all my feelings without fear of judgement is huge in my view and much safer than the current overexposure of teenagers using Facebook to vent all their feelings. which could have disastrous and confidence-killing consequences, to say the least. What surprises me til this day, however, is how I would write different “sayings” resembling more little poems than quotes per se toRead More →

I was speaking to a dear relative of mine a few weeks ago, and after I told her about Nicky’s antibodies issues that very well might prevent any cure that comes his way because his body will automatically reject it by “fighting” the new collagen that’s introduced, she asked me quite curiously how I can still have hope. My answer was swift. “I just can’t give up”, I told her. Nonetheless, it’s hard to have hope when there seems to be no light at the end of the tunnel, knowing that even if a light might be in our peripheral vision, it could very well be an illusion. Miracles happen every day. Why not one for Nicky? If I learned anything in these past 19 years taking care of my son is that true love is unconditional. Unconditional love sees past disability, fear, sadness and tragedy. Love is seeing rainbows when itRead More →

Finally… yes, finally someone makes a movie from a book about survival I can sink my teeth into. I knew when the movie “Wild” came out that I wanted to see it. I rarely go to the movies anymore (once or twice a year at best) so as soon as it was available on Netflix it was sitting in my mailbox. I will preface this by saying that this is exactly the kind of book I live for-stories of survival. I am not your novel kinda gal, save for Outlander, I guess, but that’s more an exception than a rule, and it’s only because I am so obsessed about the TV series. I’ve read many books that dance around the subject of survival in many ways, which help me a great deal and I find fascinating, from biographies to true stories of people that literally survived against all odds. My favoriteRead More →

This past Sunday, around 6pm, Nicky decided to come sit on the couch where we usually change bandages in front of the TV. I told him that I still had to finish dinner and clean up, but he said he didn’t mind, he wanted his bandages changed BAD. So bad in fact that he told me he wished we could do his ‘whole body’. I was a little stunned by this. Usually Nicky is not exactly keen on changing bandages, even at 16 I have to call him and bug him about it until he decides to come and sit down so we can get started, and we normally only do either one arm or both legs. After I got done with dinner and the cleanup, around 6:30pm I sat next to him and asked him how he felt, and how his pain measure was. Ever since he was young,Read More →