“I no longer feel the need or want to keep living 😞😞 I don’t feel strong anymore…” That sentence, if ever uttered by Nicky, is my greatest fear. He has never said that, but he’s come close to it enough times to throw me in despair. It’s the type of emotional bleeding that occurs when a parent truly understands their child’s medical fragility. We know very well that the unexpected can and does happen, that our children are vulnerable. ItRead More →

When my son was born there were no research trials, no further treatment of any kind. No pills, medications or hopes to be had. No one can prepare you for having a rare child. It’s a lonely place to be. I am a special needs parent. I got this. When I feel grief wash over me, when I am tired of fighting, when I feel isolated or exhausted, I can almost hear another special need mom telling me “you gotRead 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 →

Strength doesn’t really comes from anything supernatural, it comes out of despair and heartbreak. I assume it takes a LOT to shock a firefighter, but we managed to shock them that day. EB shocks people, it really does.  Strength has everything to do with allowing ourselves to feel whatever needs to be felt at that moment, let it all out and then deal with it. As a special need mom, I’ve had experiences where I had to fight like anRead More →

As parents, we always want to encourage our children to be able to stand up for themselves. Anytime I feel I may not be doing a good job at this considering how much I advocate for my Nicky, all I have to do is look at my healthy son, now 14 years old. He ROCKS! He’s totally willing and able to stand up for himself. He often asks me how to deal with so-and-so and comes home from school tellingRead More →

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 qualms or uncertainty of what to do or how to handle a variety of situations. But strength, I found out, has nothing to do withRead More →

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 is truly something to be said about watching someone on TV feel what you felt. It’s hypnotizing. I am a very “visual” person anyway, so thisRead More →

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 to me how this horrid disorder exists and it completely changes our view of life in ways we never knew we needed to know norRead More →