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.
When Emanuelle McIntosh asked me to be the first of Inspirational stories to share on her YouTube channel I couldn’t say YES fast enough. Nicky was on board even before I asked him if it was OK that I said yes! Nicky and I are of one mind, and when we’re...
September 1997 Nicky was starting to crawl at 10 months old and it was worrisome. His problems with his throat had become evident, as he would not swallow his saliva, so the front of his shirt was always wet. His hands (which I had no idea they could web) were...
“I have never had a day with no pain and it is almost torture to watch people do things that I know I can’t.” ~Sohana Collins (https://www.cure-eb.org/) This sweet and heartbreaking quote from a girl with EB touched me more than words can say. After I retweeted it, I asked...
I decided long ago to enjoy life for what it is, not for what I’d like it to be. People look at me and see the “together” image I’m trying so hard to portray. Maybe I hide it so well because I am so used to it. With Nicky, we’re...
Just a couple of days ago, on Mother’s Day, I received the sweetest card from my son Connor, who is 14 years old. He made me cry. He thanked me for taking such good care of Nicky and for teaching him strength. This is just part of his card: “Through...
What I am watching I have been a Chicago Fire (NBC) fan from the very beginning and the show never disappoints. I am not sure what exactly I find compelling, but it does remind me of the old 1970s shows like Emergency or even CHiPs, which I grew up on. What...
It seems like more than ever, in our connected society, everyone is hell bent in convincing everybody else that “their” way of thinking is better. Their way of doing things is better. Their beliefs are more important or more true than what another may hold. This feels almost as a...
This is an Italian-American dish. Which means, if you go to Italy, you will not find it. No restaurant will have it. However, plenty of “Italian” restaurants in the United States, most actually, will serve this dish. My aunt had an Italian Restaurant in New Mexico and that’s when I...
Worry seems to be a mantra for EB moms. We worry. Our heart sinks with every new passing. Myself, I try to cherish every day and not think about the future, it is unknown after all. Thinking positive is hard, but I do try. I keep telling myself: Nicky will...
September 2007 Nicky attended an EBMRF (ebkids.org) fundraiser at the Pier in Santa Monica and got to meet Joely Fisher, half-sister of Carrie Fisher. She was adorable and so sweet to him. Just to know she knows what EB is makes my heart swell! More in the book –> http://www.butterflychildamothersjourney.com...
Parenting a child with a life-threatening condition teaches you that life is precious. Life needs to be lived one day at a time. If I learned to smile despite the yearning to cry, it’s because my new “normal” was to make him smile. I am done being told what to...
We hurt to depths that boggle the mind, but we know joy that others will never understand. At the beginning of our journey, we may not think we can do this, we may think we’re not good enough, not patient enough, not selfless enough, but we become the parent our...
What I am watching I was looking for something to binge on Netflix last month and after watching the first 15 minutes of 3 different shows, I landed on Alias Grace and it immediately grabbed me. Alias Grace takes place in Canada in the 1840s and beyond, and tells the...
