A Mother's Journey
My heartfelt book, Losing Alex, which I wrote after the loss of my first baby, Alex, who was stillborn at full term, is now officially an AudioBook and I couldn't be more proud and humbled by the amazing voice of Marsha Waterbury, for lending her talents for my story.
I must admit, this past week it was hard to try to be my usual ‘Zen’ I try so hard to be. Nicky’s g-tube supplies failed to show up a few days before we usually run out, and with 3 days of ‘food’ left, I called, only to find out...
Please Note: I had published this post on HubPages but they keep deleting my posts for all kinds of crazy reasons (not high enough ratings, what?). I finally gave up on them and here’s my post again. Reflections and Confessions… I just finished reading a beautiful, photo-filled book of a mom...
It occurred to me this past weekend how when I saw a single negative or hateful post anywhere-on Facebook, Twitter or the Web at large-how it would just ruin my day. I would get a pit in my stomach that was riddled with ugliness and I couldn’t shake it. Let’s...
I know for many, the death of a child, an infant, the loss of a pregnancy is unthinkable. Unfortunately for many, it is a reality. After I lost my first baby, Alex, at full term, I was shocked to find out how many women suffered such loss-the latest estimates state...
Nicky’s dream has always been one of being a Pastry Chef… years ago, when he was about 10 years old, while flipping the TV channels, he came about a show on the Food Network when a sweet old lady (as he tells the story) was making soup. I think it...
Happy Mother’s Day everyone! In honor of all Mothers who had to give their children back, and as my way of paying it forward and my gift to all of you, I am offering my book ‘Losing Alex’ for the kindle for FREE for a few days. Here’s the Link...
I was just thinking last night how sweet and compassionate Connor is with Nicky. He is very patient while I spend an hour almost daily helping Nicky with his homework, about two hours every night changing bandages, about 45 minutes at night putting Nicky to bed, and another 45 minutes...
Nicky’s having a rough time right now. Just when he was able to clear his throat by chocking up a piece of skin-not a pleasant thing, since now he has a wound in his throat that needs to heal-he is now dealing with a big piece of skin torn from...
It always humbles me when anyone is inspired, cares, and takes a special interest about the devastating condition my son was born with, Recessive Dystrophic Epidermolysis Bullosa. For so many years we felt so abandoned. Nicky always thought nobody cared. I’ve always tried to change that and for so many...
Just a quick post! Jodi Champagne, who is the photographer who documented my son Nicky’s life with Epidermolysis Bullosa, was recently interviewed by an online video magazine and this is the interview. Get the Book exclusively at BLURB http://www.blurb.com/b/5024440-courage-under-wraps and on iTunes! https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11 Post Views: 2,471
I know there are some out there who think they know what the life of an EB mom is like. Maybe you’re an EB (Epidermolysis Bullosa) mom yourself, and this is your truth, but to others, this may be a surprise, or even a revelation. Here’s what my life it’s...
On my last post I talked about Insurance Companies and the hell they put me through the past 17+ years. I also explained why they bother me so much-the endless bills they do not pay or refuse to pay when they should, my two bankruptcies, and the simple fact that...
Two years ago it became clear that Nicky’s power chair was on its last leg. The chair was 6 years old and it was literally falling apart. Not only that, Nicky was 9 when he got it, and he was now 15, he barely fit into the thing anymore. The...
I came across this picture of Nicky the other day while transferring photos from one computer to another and I had to stop and admire it. This is Nicky, he was 2.5 years old, with a needle in his hand, poking his own blood blister on his wrist. Just the...
