May 30, 2020
Blog Quotes
April 15, 2020
December 1, 2019
August 21, 2019
July 18, 2019
March 26, 2019
November 21, 2018
Blog Quotes
Planning a year from now, a month from now or a week from now isn’t always an option. I make and break plans constantly because my child’s health can turn on a dime. We spend our days changing bandages, fiddling with medications, with needle pokes, blood draws & infusions and...
August 23, 2018
Blog Quotes
If there was one thing I’d want everyone to know it’s to please be aware that parents of special kids, especially those with lethal conditions, are hurting. Badly. So, when you see a parent pushing a child in a wheelchair at the grocery store or at Target, send them a...
May 18, 2018
Blog Quotes
I decided long ago to enjoy life for what it is, not for what I’d like it to be. People look at me and see the “together” image I’m trying so hard to portray. Maybe I hide it so well because I am so used to it. With Nicky, we’re...
March 25, 2018
Blog Quotes
Sometimes, when I sit down and think about it, I forget that the kind of stuff we deal with on a daily basis isn’t normal for most people. I forget, because after 20 years, they are normal for us, and even though I have a healthy child to remind me...
October 31, 2017
Blog Quotes
Life hands us raw deals, and we can either laugh or cry, and while I am not sitting here telling you I’ve never cried, nowadays I try my best to enjoy life, enjoy the little things, enjoy the moment, take it all in. I don’t intend to host a pity...
October 5, 2017
Blog Quotes
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....
July 11, 2017
Blog Quotes
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...
May 11, 2017
Blog Quotes
As mothers (and fathers!) we have children for many reasons, none of which include seeing our babies in pain for decades nor burying them. The death of a baby is a scarring event, make no mistake about it. The thing that haunts me the most is that it’s so final....