OK, so this blog is a lot longer than I intended to… but how do you sum  up the time of your life? This is a trip we’ll never forget. Thanks to everyone that made it possible! As many may imagine, Nicky’s life is full of pain. Medications to alleviate pain, to soothe the skin, to help bowel movements and to relieve itching are only a part of the puzzle. There are the nightly bandage changes, the difficulties of walking due to his wounded feet, and the nightly g-tube feedings. Everything is difficult. Everything is a challenge. Then, of course, there is school, Doctor’s appointments, Iron infusions, trips to CHLA… and the list goes on. How do you give a child in this much pain some joy? We had used our ‘Make-A-Wish’ 11 years ago when Nicky started kindergarten (which I talked about in my last blog), so I neverRead More →

I had a great friend yesterday ask me if I could write a blog about how people should handle things when they see a child that is disabled. Different. What do they say to the parent? Anything? Should they avoid the child or engage? What’s the appropriate thing to do? I must say, I had to think about this one. Truth be told, being a special need mom can be isolating, lonely.  No one knows what to say to me.  I feel a distance, a disconnect from just about everyone because I know that they don’t know what this feels like and they just can’t relate. I have family members who have not spoken to me in years because of this very reason, they just don’t know what to do. I have supposedly ‘close’ friends who can only mutter a word or two… on occasion. They might wish me HappyRead More →

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 from all over the world who had great fun sending horrific messages to grieving mothers. I tried to fight back and call them out at first but in turn they only got uglier and nastier (and nasty does not even begin to describe their messages). In the end I blocked them all (it’s a long story actually, if you want to know the details please get your copy of my book,Read 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, and only a few months later her daughter died in her arms. Perhaps is the rarity of EB, or the fact that I am yet to find another patient who is like Nicky (similar.. yes, like him, no) or perhaps the conflicting, often absurd advice I have gotten from the Medical Community, the fact remains that long ago I decided I could never rely on Doctors’ recommendations or advice and had toRead 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, the doctors thought it went terribly wrong. They feared they had perforated his esophagus. In the end they didn’t, but I was in *hell* for a couple of days. Here is what I posted: “monday, august 6. 2001 I am a little upset today. Some people seem hell bent to put down parents whose only lifeline someday is hoping there will be a cure for their dying child. What is itRead 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 you go back to school, or after Nicky graduates High School next spring.” “What are you going to do?” he asked. To that I replied I hoped to be teaching Web Design either at the College or elsewhere (among other projects I will be doing from home). My son’s inquiry, however, had nothing to do with wanting his mom to work, and everything to do with *not* wanting me to work,Read 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 the luxury to attend classes, I can’t help but remember that this year, 2013, should not have been about me or my graduation at all, it should have been Alex’s. I will always have that feeling of ‘something is missing’, or better, ‘someone is missing’. Alex, my first baby that was stillborn at full term, would have been 18 years old as of this past March 1, hence he would mostRead 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 too bad because I was still buying diapers for my 11 year old son and that I would be buying them forever. “Oh”, they said, all of a sudden being grateful that their daughter’s issues were just temporary. I’ve said it before and I will say it again, there is always, always, always, someone in worse situations than you.  This does not mean you can’t complain or be bothered or ventRead More →