The Hard Work of Being Hopeful

Society as a whole is filled with nice people. I met a ton of these kind people, whose heart is filled with kindness and generosity. But I don’t live in a bubble. I know some people are cruel. I know there is hate in this world. I know there is racism, bigotry, prejudice, misogyny, homophobia and discrimination. And while I encountered this cruelty in my life before my children were born-and stillborn, I just didn’t know how real it was until I became a special-needs mom. I am a little weary taking Nicky anywhere with me-a simple trip to Target can be filled with long stares, ugly looks and whispers. It’s unconscionable, but that’s how it is. This isRead More

Blog Quotes

Don’t know what to say? Google “what to say to a special needs mom” or “what to say to a bereaved mom” and you will be inundated with amazing, perfect sentences you can add to your repertoire and make you look as the most amazing, empathetic person on the planet. Try it, seriously. You no longer need to abandon your friends and families when they need you, just Google what to say. You will be their hero forever. Nicky’s form of EB was one of the rarest, and as much as I admired and trusted his Doctors, I also knew that I – and Nicky once he was old enough to understand – had the final say inRead More

Inner Strength

Nicky’s inner strength is something I deeply admire. There are times that he still surprises me with his wit, the way he thinks and the way he handles things. He’s such a loving, deeply interesting boy for those that care enough and are lucky enough to get to know him. He suffers greatly as well though, and that fact can never be ignored. I took the following pictures this past month to give everyone a small glimpse of what his skin looks like under the bandages. He’s part of the SD -101 cream trial (http://ebstudy.com/) so if you think his wounds look better, it’s because they do. This is his right arm. It’s looking fantastic. I know, I know,Read More

Perseverance

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” inRead More

Living in Fear?

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,Read More

Unpredictable

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 couldRead More

Hope Against Hope

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 IRead More

Survival

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 aroundRead More

A Matter of Perspective

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. AfterRead More