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.
Something happened yesterday that made me realize we have a LONG WAY TO GO before we can say all disabled people are treated like decent human beings, always. Nicky hasn’t been able to walk since he was 15 years old and damaged his feet beyond repair. With RDEB, when an...
Yet, here we are. And I still have some dwindling hope against all odds, because it’s hard to hope when your child pushes against a very strong current. My hopes and dreams I have for my child die a little more each day as I watch him struggle to just...
I was watching “The View” this morning and it got me real upset. Megan McCain, who has no children, let alone sick children, can spew out her superior “Pro-Life” views (It’s “Murder”” she screams, over and over again), but what begs the question is WHY her party consistently and persistently...
What I am watching When season 1 of 13 Reasons Why dropped on Netflix last year I wasn’t interested in watching it at all. Let’s face it, it has been a LONG time since I was in High School, and little by little, year after year, movies or shows that...
Two years ago Nicky started a clinical trial at Stanford with a cream called “Zorblisa” that helped his wounds heal quite a bit. This is not a cure, of course, but getting wounds not only healed but healed WELL is always paramount to ensure optimal health. No wounds = no infections...
This is also an Italian-American dish. Which means, if you go to Italy, you will not find it. I first had this soup at Olive Garden and I loved it so much I searched high and low for a recipe, and I tweaked this enough to make it as close...
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...
