A few years ago I was presented with a situation that was hard to digest. As I describe in detail in my book Losing Alex, a group of what I can only describe as ‘evil people’ had targeted me big time. Since my website showed me the referring links (basically how they found me… was it google, yahoo, or a link from another website) I was able to find this horrific bulletin board, a group of truly disgusting individuals fromRead More →

I was deep into reading a wonderful book wrote by a local mother whose daughter had brain cancer and something she said hit me like a ton of bricks. And not in a good way. Without admittedly doing any research on her own, or talking with other parents in similar situations or consulting with any other Doctor, she put her daughter’s life in the hands of just one Doctor. When he turned out to be wrong, the unthinkable happened, andRead More →

Last night I came across an old blog of mine circa 2001, and the words I spoke on that blog are as true today as they were back then. I am not sure if I am sad that my attitude has not changed, or happy to know I was right in feeling the way I did so long ago. I wrote this a little over a month after Nicky had a throat dilatation that, for a couple of days, theRead More →

My 9 year old kind of shocked me today, but in a good way. Last Friday he attended my College Graduation and he waited until today, when I went to help out at his ‘Unity Games’ to ask me this: “Now that you don’t have to go to school anymore, when are you going to get a job?”. “Funny you should ask” I mused back. I was laying out my plans to do just that either this fall when youRead More →

In 9 days one of my biggest dreams will come true… I will graduate from College with a Double Degree in two areas I adore, Graphic Design and Digital Imaging. I will be official in being what makes me, ME. It’s a huge accomplishment.  I will relish that moment and that joy, knowing, deep inside, something is missing. While I am very proud of what I was able to do, which was very hard at times to even have theRead More →

When working at Target several years ago as a cashier, a couple came in to buy a large pack of diapers and as they were checking out they told me, in a sarcastic and bothered kind of way, how they could not believe they were still buying diapers for their 7 year old daughter. I asked about their daughter and they told me she had some issues with some sort of disability, and I told them not to feel tooRead More →

I was changing Nicky’s gauze last night, once again being amazed of how much certain types of gauze helps or protects Nicky’s skin and I wished the myself of today could not only advise the me of 16 years ago, but actually hand over the supplies to do it. If I could, Nicky would for certain be better off today. No doubt about it. I can’t even begin to describe the horrible shape I was in when Nicky was born.Read More →

I just noticed that I haven’t posted any ‘wound pics’ of Nicky in a while, so I picked about 4 that I took in the past 2 months. For those that are unfamiliar with my son’s struggles, he was diagnosed at birth with EB-short for Epidermolysis Bullosa. When he was a mere month old he was further diagnosed via skin biopsy with a rather severe form of this condition called ‘Recessive Dystrophic’ (RDEB), one of the rarest, more severe andRead More →