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.
A recent visit to the ER for my son Nicky powerfully reminded me how much power we have, as parents of children with rare diseases, to control the situation. To control how we are treated. To make sure we are listened to. We are, after all, the experts on our kids!...
If there was one thing I’d want everyone to know it’s to please be aware that parents of special kids, especially those with lethal conditions, are hurting. Badly. So, when you see a parent pushing a child in a wheelchair at the grocery store or at Target, send them a...
It’s that time of year where depression sets in. The time where “vacations” are over and it’s back to the old grind. Of course, the fact that Nicky is having the corneal abrasion from HELL doesn’t help at all. It’s the constant battles, every time you turn around, that exhaust...
What I am watching I am a huge Trekkie as my friends know. I used to go to Star Trek conventions back in the early 90s! I am also, shall we say, an equal opportunity Trekkie. I like all Trek shows, movies, all the time, unlike my sweet hubby who...
Going to the Debra.org PCC is always a treat. The first Conference I attended with Nicky was the one held in Los Angeles in 1999. It seems like forever ago. Nicky was 2.5 years old and by then I had many “online” friends which I had the absolute pleasure to...
As Italian as you can get, this was a dish my mom made all the time!!! I wish I could say you could use “any” rice to make this, but Arborio is the rice you should use for this dish. Thankfully you can now find this type of rice anywhere...
My son Nicky was diagnosed with Epidermolysis Bullosa (EB) 12 hours after his birth, a month later we received the official diagnosis of “Recessive Dystrophic”. Here are my top 6 things to know about Epidermolysis Bullosa. 1. Epidermolysis Bullosa is a genetic skin disorder. Epidermolysis Bullosa it’s an umbrella term...
February 2002 – The famous rainbow cupcake at SeaWorld (Florida)!! From the book: “Before we left the park that evening we had to grant Nicky one last request: earlier in the day he had seen this “rainbow” cupcake and bugged us about it, but at the time we could not...
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...
