Don’t know what to say? Google “what to say to a special needs mom” or “what to say to a bereaved mom” and you will be inundated with amazing, perfect sentences you can add to your repertoire and make you look as the most amazing, empathetic person on the planet. Try it, seriously. You no longer need to abandon your friends and families when they need you, just Google what to say. You will be their hero forever. Nicky’s form of EB was one of the rarest, and as much as I admired and trusted his Doctors, I also knew that I – and NickyRead More →

Every three months I have an appointment with my psychiatrist and I strangely look forward to it. He is not a therapist per se, we do talk about my mental struggles, but I do not spend an hour blabbing about my problems. I say “strangely” because before my appointment I am forced to do an inner assessment of why I am feeling low lately so I can accurately explain myself to him. I am not used to explore my inner feelings, I have to force myself to. I am not used to try to figure out why something bothers me, but one thing is forRead More →

August 1997 – Nicky and I on our way to our anniversary dinner. ~ Excerpt from the Book “Butterfly Child” “The Physical Therapist became sort of a confidant; after all, I saw her twice a week and I felt she was one of the few people that might have answers to a question I was constantly asking myself: ‘Is this normal?’ It’s just the nature of having a child with a disability and not having another child to compare him to. Sometime it was normal, but most often it wasn’t. I was determined to give my son a quality of life that was as highRead More →

“I care too much, and it’s OK. I will not let anyone tell me I am wrong to love, to have empathy or compassion. Period.” That is what I posted on Facebook this morning with this image on the right from this great Minister John Pavlovitz which I’ve come to greatly respect. What prompted this post? Basically the hatred that I see from my so-called “friends” and people that I once admired. People that have nothing better to do with their day but spewing uncompassionate statements about the poor, the needy, the handicapped, the immigrants, you name it. The bullying and condescension over the less fortunateRead More →

I was reading an excerpt of the book by Taraji P. Henson (Around the Way Girl: A Memoir) about her life as a single mom and it hit me hard. Harder than I imagined. I read and re-read the few sentences and I felt as if I wrote them myself. Needless to say it’s next on my “to read” list. Taraji was married to what she calls her “forever man”, her first love, but over the years he eventually became physically abusive.  It took guts, but she decided to leave him-which was a sound decision as it saved her and her son’s lives. Unfortunately thisRead More →

Just like all EB patients are different, so are the parents. All I ask is a little respect. I’ve taken care of Nicky’s every need since he was born. Please allow me the benefit of the doubt that I know what I am doing. I’m maxed out with advice. And although I respect you, I don’t need you to judge me or assume. I need you to support me and believe in me. I’m doing the best I can.    I never learned to look down on the poor, the disabled, the disadvantaged, the elderly, and I never will. I don’t judge people I don’tRead More →

The other day I came across a post about “9 things Italians living in the US will miss“, and while I concurred with everything posted, the one that spoke to me most was the one about family living close by. Oh, how I miss that! But it goes further than that. It’s the whole culture, the whole mindset that came to mind while I was reading this post. The mindset of caring for one another in a broader sense. In the U.S. most kids move away from home, following job opportunities across the country, moving far away from home, often right at the age ofRead More →

The other night I was changing the bandages of Nicky’s lower back and to my dismay, in the attempt of healing the area, the opposite happened. It’s now worse than it’s ever been. The whole area is a BIG open wound. Ugh. It’s always a shock to me that I can even do this. Before Nicky was born I was an absolute wimp, who could not watch my own blood being drawn. Amazing what we learn to do out of love for our children. WIth his lower back now a bloody wound, my heart sank. Because of that, I resolved to make sure to useRead More →