Minnie Driver is probably my favorite actress nowadays. A few years ago she tackled a subject near and dear to my heart by portraying a mother who had a stillborn baby in “Return to Zero“. Her performance was simply phenomenal. She totally nailed it. Her character’s  experience was also fairly close to mine, and there is truly something to be said about watching someone on TV feel what you felt. It’s hypnotizing. I am a very “visual” person anyway, so this movie was truly special for me. Fast forward a few years, and now we have Minnie portraying a Special Need Mom in the new TV show called “Speechless”, in which she is a take-charge mom to a teenage son with Cerebral Palsy. Minnie is now mimicking my life. First as a mother of a stillborn baby, now as a mother of a child with special needs. I watched the show with NickyRead More →

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. Nicky loves and cherishes his hands, and wrapping them is as important to wrap for us as any other part of his body. It’s just incomprehensible to me how this horrid disorder exists and it completely changes our view of life in ways we never knew we needed to know nor learn. Not sure I mentioned lately how much I hate EB. There you have it. I hate EB. This grief thing is just bizarre. I rarely think of Alex and cry anymore, good gosh, it has been nearly 20 years since his death, but sometimes feelings resurface and I am a mess. It is what it is, I guess. It’s “okay” I tell myself. I am human. Most people don’tRead More →

The other day Nicky had his first appointment with a Physical Therapist in our home. Aside the fact that this was the first time in his life that his insurance approved such a thing, I wasn’t sure exactly how she was going to accomplish anything with Nicky, knowing that moving at all is just so painful for him and she can’t touch him at all. My worries however, had to take a backseat when she said something to me you should never, ever say to a parent of an EB child, especially one as old as Nicky. Without knowing anything about EB at all, she told me to “be careful” of what I put on his wounds. “You can’t just put any cream on wounds”. She said. Hmmm… Duh? Mind you, she’s not a nurse nor a Doctor, she’s a physical therapist, and she never saw Nicky’s wounds, I hadRead More →

Ever since Nicky graduated from High School, one of these questions seems to be on everyone’s lips: “What is Nicky doing now?”, “What are his plans?”, “Is he going to College?” or a variation of these. The truth is… I don’t know. As a parent of a child who is medically fragile (to say the least), I don’t know what my son’s plan is, or what he will do. He would like to do things, but on most days it’s a challenge just to drag through another painful day without trying too hard to think about the future. Planning for something like College seems impossible when I don’t know if he’ll even make it to next week. I can only wish and hope I can find a way to help him through this day and deal with the constant barrage of pokes and needles, bandages and medications. I hope the clinicalRead More →

I remember clearly being sick when I had a “regular job”. It was pretty simple, really. I would call in sick and I would stay in bed all day. I even remember with sadness when I left work when I started bleeding when I was 7 weeks pregnant back in late 1995-from there I went to the Doctor who did an ultrasound and could not detect a heartbeat and sent me home on bed rest. My employer at the time was extremely kind and told me to stay home “as long as I needed to”. I laid on the couch for days, not doing a thing. The bleeding kept getting worse, culminating in a miscarriage. This was 7 months after I had buried my first baby, so to say it was devastating it’s the understatement of the year. But, alas, I didn’t have to do anything but take care ofRead More →

I was recently asked the following question by a reporter: “What do you want others to know about genetic disorders and the challenges individuals who have them and their families face?” So I wanted to share my answer here: I think the foremost thing I would like people to know about EB in general is that this condition exists and it’s horrible. There is no sugar-coating EB or trying to make it worse than it is, we couldn’t imagine a worse condition, ever. The pain the patients go through, especially in the worse forms, is unimaginable. Awareness is key. Without awareness we have nothing. Without awareness we can’t hope to raise funds to find a cure. Then I would love for others to accept us and just love us. So many families feel abandoned by family, friends and shunned by acquaintances. They don’t know what to do or say, soRead More →

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. Nicky in the end is my ultimate teacher. It’s because of his lack of bitterness, lack of hate, lack of negative thoughts, that I am becoming a better person. I would love a weekend away with my husband to feel like a wife and a woman, but an EB trained nurse to provide child care is nonexistent. I made peace with that. Being compared to others does something to our self-esteem that is extremely damaging.. I don’t particularly enjoy seeing him in more pain, but he has decided long ago that having his hand somewhat functional is vital and important to him is worth the pain. Make sure your advice is wanted and asked for. It may seem common courtesy, butRead More →

This is the first of what will eventually be many posts over the next several months or longer of quotes pulled right out of this blog of mine. Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. While you stare at my child, is it too much to ask you to smile? A little smirk? A Wave? Small talk? “Hey kido, having a good day?”, anything will do. I promise you, he won’t bite. I have learned that life is far from fair and we would be better off flinging that thought as far from us as possible. EB is relentless, does not stop for anything nor anyone. It’s a struggle to keep fighting at times, but we will keep fighting. For the past 19 years we tried it ALL-bandages, noRead More →