My body, in its irritatingly accurate alignment with time, woke me up at 5:29 this morning. My very first thought was “Oh thank god, it’s still nighttime.” Annddd this thought was followed immediately by the dreaded sound of my alarm and a very angry protest from my exhausted mind. https://videopress.com/v/iRTFDySz?resizeToParent=true&preloadContent=metadata But although I am unlikely to ever... Continue Reading →
Being a Motherfucking Sorcerer
We are living in some pretty crazy times right now. As teachers and parents scramble to figure out the intricacies of e-schooling (like how to properly mute the zoom lesson so the class doesn’t hear how often you employ expletives in your household), and as the COVID numbers continue to rise, the roller-coaster of 2020 speeds... Continue Reading →
Dazed & Confused
https://videopress.com/v/RLNv5T4y?preloadContent=metadata Let’s be honest. In the world of severe disability, there are not too many good choices. At each crossroads there is a decision to make and rarely is it clear which path to choose. Three years ago, sleep deprived to the point of near collapse, we finally gave into the option to give Oliver... Continue Reading →
Please Stop Telling Special Needs Parents that “God only gives us what we can handle.”
Receiving this unwelcome comment seems to be unequivocally loathed among many special needs (SN) parents. Most people are well intentioned and share a genuine desire to offer support to others going through hard times. But the statement “God will never give you more than you can handle” is one that comes up frequently in the SN community... Continue Reading →
May the Angels Fly High
Most of us share the basic human desire to escape pain. It is weeks like this one that illuminate the desperate attempts my mind makes to transcend my own. Our HIE community was shaken by the passing of 3 of our children over the last week. This unbelievable loss has thrust me hard back into... Continue Reading →
Unexpected Blessings
I was in rare form this morning. Well, let's be honest, it's not so rare these days. LOL After all of the craziness of the last couple weeks, I completely forgot about our Gastroenterology appointment at UCLA this morning. Luckily I had glanced at my calendar last night and caught my oversight before missing it... Continue Reading →
The Anger Stage
Today was hard. I was inarguably consumed by the anger stage of grief. Before I write though, I want to preface this post by saying… I do not share our experience for pity or attention. My writing is a way to help me process through the harder parts of our journey. Sharing what I write fulfills a different purpose... Continue Reading →
Armpits and Toothpaste
The early hours of this morning felt like something right out of a twisted psychological thriller. Oliver’s schedule is pretty off and he was still wide awake at midnight. I lied down in the parent chair next to his bed, put on the tv and tried to rest, hoping he would fall asleep too. We both started to... Continue Reading →