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.
Like every morning, I just spent a good 20 minutes taking off Nicky’s diaper from the night, changing all the bandages and Mepilex Lite pieces all over his bottom and thighs and replacing them with clean ones, and then putting on his underwear for the day, all the while Nicky...
I was looking at this photo in Nicky’s bedroom last night and as I pointed to it, I told Nicky… “Look, weren’t you just simply adorable”? I kept staring at it, and staring at it, marveling how good Nicky looked in this picture, like a normal 9 month old, then I...
As some of you know, I am writing a book about my son’s life with EB. I subtitled it ‘A Mother’s Story’ because while I try to stay true to Nicky’s feelings and trials, it’s a tale from my prospective, a mother’s prospective, and what I learned during this 18...
I’d like to think at times that I am more than an ‘EB mom’, but sometimes the lines get blurred. EB is part of everything I do, even though I do not have the condition, it dominates a lot of my day and of our family’s life. Still, sometimes I...
I wanted to share this picture of Nicky’s right hand a year post surgery. It’s doing fantastic! We do wrap the hand religiously and use the splint every night to keep the opening between the thumb and index finger intact, and while we lost a bit on the pinky, it...
A quick note! I just updated Nicky’s blog at CaringBridge… I talk about his throat surgery, and lots of good news! Here’s the link! http://www.caringbridge.org/visit/nickyz/journal/ On another note, I’ve been wanting to repost this BLOG I wrote for the EB Info World website about a year ago because it’s still and always will be...
This past week we were fortunate enough to visit Legoland-a friend who did a fundraiser for us bought us the tickets, of which I will forever be grateful. I wish I could convey in words how much fun Nicky had in this trip and how nice everyone was to us...
The other night it took me over one hour just to put Nicky to sleep. Not that it was a stretch, as it usually takes me at least half an hour to 45 minutes. There was the oral care, the g-tube preparation, the bed preparation (bed needs to be cleaned daily)...
Have you ever had that feeling of being so completely overwhelmed and depressed, yet refusing to give up because, well, you’re not made that way? That’s how I am today. Sometimes I wish I was the kind of person that just ‘gives up’, ‘put a fork in me, I am...
I got hit with a big blow yesterday, one I’ve known all along nonetheless. As the DNA results came back that Nicky did in late April at Stanford to find out if he’s eligible for the skin graft trials, I’ve been trying to decipher them myself. I will talk to...
I don’t often recommend books, and I must admit, I am an avid reader, so I should do it more often. The type of book I look for, however, is not your novel or anything that is fictional. I feel as if there is plenty of time during the day...
The word of the day might as well be ‘awareness’. Not only Nicky’s book was featured on a story on FoxPhilly, but a good friend told me how anytime he buys EB eggs he thinks of me! That was too funny. At any rate… we got back from Camp Wonder this...
Just a quick note – I just updated Nicky’s blog at CaringBridge… I talk about his recent struggles, results from his biopsy and camp stuff. Here’s the link! http://www.caringbridge.org/visit/nickyz/journal/ On another note, I recently came across this BLOG I wrote for the EB Info World website a couple of years ago...
So much to tell with the amazing pouring of support due to the story on Nicky that aired on the local FOX11 and more…. Before I get started… four links: 1. Nicky’s original story that aired on FOX11 in late April… http://www.myfoxla.com/story/25298119/a-rare-condition 2. Nicky’s follow-up story on FOX11 that aired...
