Tag : special need parenting

9 posts

If there is a sentence I hear a lot from family and friends in general is how “strong” I am. Before the stillbirth of my first baby, before the miscarriage, before Nicky’s birth, I somehow thought that strength had something to do with “grin and bear it”, or having somehow the ability to have no …
Minnie Driver is probably my favorite actress nowadays. A few years ago she tackled a subject near and dear to my heart by portraying a mother who had a stillborn baby in “Return to Zero“. Her performance was simply phenomenal. She totally nailed it. Her character’s  experience was also fairly close to mine, and there …
Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. Nicky loves and cherishes his hands, and wrapping them is as important to wrap for us as any other part of his body. It’s just incomprehensible …
The other day Nicky had his first appointment with a Physical Therapist in our home. Aside the fact that this was the first time in his life that his insurance approved such a thing, I wasn’t sure exactly how she was going to accomplish anything with Nicky, knowing that moving at all is just so …
Ever since Nicky graduated from High School, one of these questions seems to be on everyone’s lips: “What is Nicky doing now?”, “What are his plans?”, “Is he going to College?” or a variation of these. The truth is… I don’t know. As a parent of a child who is medically fragile (to say the least), …
I remember clearly being sick when I had a “regular job”. It was pretty simple, really. I would call in sick and I would stay in bed all day. I even remember with sadness when I left work when I started bleeding when I was 7 weeks pregnant back in late 1995-from there I went …
I was recently asked the following question by a reporter: “What do you want others to know about genetic disorders and the challenges individuals who have them and their families face?” So I wanted to share my answer here: I think the foremost thing I would like people to know about EB in general is …
Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. Nicky in the end is my ultimate teacher. It’s because of his lack of bitterness, lack of hate, lack of negative thoughts, that I am becoming …
This is the first of what will eventually be many posts over the next several months or longer of quotes pulled right out of this blog of mine. Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save …