August 21, 2019
special need parenting
August 14, 2019
What I’m Into {Summer 2019 Edition}
What I am watching The fact that I was going to watch The Spanish Princess on STARZ was a given! This is basically the “sequel” to “The White Queen” (about the life of Elizabeth Woodwille, wife of Edward IV) and “The White Princess” (about the life of Elizabeth of York,...
July 18, 2019
March 26, 2019
December 4, 2018
When Caring for Your Medically Fragile Child is a Full Time Job…
It’s often a full time job caring for a child who is medically fragile. We are not only parents; we become nurses, therapists, chauffeurs, companions and more. For some of us, the needs of our child are so time consuming that working outside of the home becomes impossible and impractical....
October 3, 2018
My Greatest Fear
“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...
September 25, 2018
Blog Quotes
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...
February 27, 2018
Blog Quotes
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...
January 29, 2018
Blog Quotes
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...
December 8, 2017
Standing Up For My Son
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...
October 4, 2016
September 26, 2016
Speechless
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...
May 16, 2016
Blog Quotes Part 3
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...
May 4, 2016
How To Show Respect to an EB Parent
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...