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.
May 1998 – I love this picture of my grandma Rina (then 95 years old, she passed away in 2005 close to her 102nd birthday!!), playing around with Nicky when we spent 8 months in Italy. My mom is holding him. We had gone to Italy to basically save me...
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...
January 2009 – Nicky was 12 years old in this picture showing his “talent”, LOL. He can’t really keep his legs straight to walk, but he sure can do other things… crazy! More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,...
I came across a blog yesterday that I could truly relate to. It was about a mom adjusting to her special needs daughter transitioning from “childhood” to “adulthood” after graduation. In her blog she states she learned 5 things about this new stage of her life as a parent of...
As I explained quite thoroughly (I hope) in my blog “Dumbing Down EB“, EB varies quite a bit. There are forms that are lethal to babies, forms that get better with age, forms that get worse with age; each form of EB has several subtypes, which can all vary wildly....
… because taking photos of beautiful things makes me happy! Enjoy! Love & Light, Post Views: 2,163
As many of you know I read a LOT of books. And in my humble opinion I don’t read enough! But I wanted to take 5 minutes out of my day to let everyone know about this particular book I am reading right now because it’s really, really inspirational. I...
On my radio show/podcast yesterday I tried… or, rather, attempted, to illustrate the genetics involving EB in a fun way, evoking the dormant (sleeping) recessive gene and wishing it could sleep more often. Alas, genetics are hard to explain. While after nearly 20 years I am on a weekly basis describing the blisters...
June 2008 – Nicky was 11 years old in this picture taken at Camp Wonder in Livermore (CA). I started taking Nicky to camp in 2003 when I was pregnant with Connor and we’ve gone every year since. Nicky told me the other day that he’ll go as long as...
As some of you may or may not know, I love photography. Of course I do not get the chance to travel much and when I do I take my son to the various hospitals, so my photographs tend to concentrate on the areas that I see along the way...
I came across a short movie (23 minutes) the other day, produced by a UK charity called “Abigail Footsteps” called “The Deafening Silence” and I just cannot get it out of my head. I’ve seen other movies depicting… or trying to… show the emotion and devastation of stillbirth, and while they...
February 2004 – Nicky was 7 years old in this picture with his little brother Connor, who was 6 months old. I love this picture. I can’t help but remember how much Nicky loved his little brother when he was little, he simply adored him. Of course their relationship has...
It has been said that opinions are like… ahem…(feel free to fill in the blank)… everyone has one. We all know that well, don’t we? I came across a blog just today that explains people in similar positions as mine that go through exactly this. Let me give you a couple of...
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...
