July 2013 – Nicky, 16.5 years old, on the deck of our cruise ship as it was approaching Dawes Glacier. Following is an excerpt from the Book “Butterfly Child”. In early 2012 a woman from the Scott Ward-Schofield Memorial Fund contacted me. This Charity was formed to raise awareness for Epidermolysis Bullosa and arrange and pay for holidays, short breaks and special days out for sufferers and their families/carers. I was happy to help this woman spread the word aboutRead More →

December 1998 – Nicky, 2 years old, showing off his straight ‘new’ hand after surgery. Following is an excerpt from the Book “Butterfly Child”. The hand itself, thanks to my hellish efforts did heal up straight, but for a while there I thought it wouldn’t. As wonderful and caring the hand surgeon was, he just could not comprehend my paranoia in making sure the hand healed straight. The problems with the scar tissue that covered Nicky’s hand before the surgeryRead More →

October 1997 – Nicky, 11 months old standing up on the couch. He was so excited! Following is an excerpt from the Book “Butterfly Child”. This happened right around the time this photo was taken: “A few days later, in the evening, Nick and I were watching “Wheel of Fortune” when Nicky out of the blue started throwing up serious amounts of blood. It was a lot more than the previous week; it was a scene out of a horrorRead More →

June 2001 – Nicky, 4.5 years old @ Stanford just before his dilatation. Following is an excerpt from the Book ‘Butterfly Child’ Chapter 9 “One of the things that turned out to be very frustrating about the move was finding a new Pediatrician. After much research I took Nicky to the first appointment and let’s just say this woman was a complete disappointment. Not only she was quizzing me on the minutiae of his care, which made me feel defensiveRead More →

Nicky in Kindergarten, late 2001 – Kindergarten was only “half day” so school started a little after 8am and ended at 11am. The teacher suggested him coming in on Tuesday/Thursday only to get used to it, and if he could handle it, then he could come every day. This was all fine and dandy, but how was I going to just “drop him off”? I had written an extensive sheet of “what to do in case…” for the teacher andRead More →

March 2009 – Brotherly Love! Nicky (12 years old) is hugging his little brother Connor (5 years old). So cute!!! I love doing digital scrapbooking but I haven’t done it in a very long time… as soon as I am finished digitizing all my old videos I will try to devote a morning a week doing this again. So much fun! How cute is this brotherly love page? I love, love, love my babies. More of Nicky’s story in theRead More →

September 1997 – The Theme for Nicky’s nursery was Pooh as it’s painfully obvious! I love how I set up this photo in his crib with all the Pooh characters. And that smile… it just melts me all over… More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 308Read More →

August 1997 – Nicky and I on our way to my anniversary dinner…. Nicky looks so spiffy, but despite the smiles, behind the scenes, I was a mess. At this point I was taking Nicky to the Physical Therapist twice a week and she became sort of a confidant; I felt she was one of the few people that might have answers to a question I was constantly asking myself: ‘Is this normal?’ It’s just the nature of having aRead More →