One would think that after all these years of dealing with the Insurance, Medical Groups, Doctors, NPs, Referral and Service Personnel and the Medicalese involved, I would no longer have to deal with the insanity and run-around of people telling me completely different things, but I suppose I am no immune to ignorance. Just because I’ve dealt with stupid people before, that does not mean it’s not going to happen again. Ugh. Late last year the company that provides usRead More →

December 2001 – We spent the holidays in Italy with my family mostly because flying after 9/11 was absurdly cheap, but I was aching to see my mom, who spent the 3 previous months in a hospital following a scary infection that almost took her life. Nicky had a blast in the snow, he was so cute. Just yesterday my husband asked me if we could give away this coat he’s wearing in this pic. I am not a hoarder,Read More →

I am not sure I mentioned lately how much I absolutely love and adore my husband. He actually has a reminder on his phone to “comfort me” at this time of year. And he does. His strong hugs are so helpful to me I am not sure he knows how much. Yes, I know, it’s been a long time. 23 years is a very long time. I am sure there are some out there, surely those that have never lostRead More →

The contradiction of it all is that parents of special need children find their strength not truly in themselves, but through their love for their child. If this election cycle has taught me anything is how to raise my standards. I see people go so low it’s disgraceful. If any of us are going to be able to raise above and become better versions of ourselves, the work is within.  My tear ducts spontaneously go on overdrive when I rememberRead More →

Follow my blog with Bloglovin Rare Disease Day in February 28th this year! Nicky was featured on the Global Genes website back in 2014. As always, we are very open to share our story to gain awareness about Epidermolysis Bullosa. I can’t speak for other parents of kids with EB, let alone parents of kids with other disabilities, but I welcome questions about Nicky. I want to help shape the perception that anyone might have about people with disabilities. IRead More →

What I am watching I know I am extremely late to the party, but by the time I heard about how fabulous this show was it was too late to start watching from the beginning. Looking for something to watch right after Christmas after Outlander ended I saw that Downton Abbey was available to stream on Amazon Prime and I got hooked from the very first episode. I love the period it entails, right around WW1 and after, the fatherRead More →

It’s late February. It’s inevitable. Everything affects me more deeply. I find myself being more melancholy, my grief is more intense, disabling, confusing and all-consuming. My son Alex should be 23 years old in a few days. I didn’t just lose a baby these many years ago, I lost a lifetime of memories with someone that I loved before we ever met. Some of the hardest losses we experience as human beings are those involving children. They go against nature.Read More →

August 2013 – Nicky right after he woke up from his hand surgery at CHLA with his dad. It always amazed me how strong he is. He wanted this surgery and it ended up to be really good for him in the long run as well. We use a splint to keep the thumb “out” at night and even after 3.5 years using that with the wrapping he lost very minimal web space. Of course his hands are far fromRead More →