A Journey from Darkness into Light
Whether it be the death of our identity, our ego, of a relationship, of a dream we thought would one day be, or the disintegration of our human bodies, we think of death as the ultimate end, a ceasing of something we wanted to prolong. "It’s not what happens. It’s how you then react to it. It’s not what happens. It’s how you then react to it.”
To everyone who suddenly feels like the world is one giant infectious monster, to those holding their breath as they pass oncoming humans on the sidewalk, to the people cancelling plane tickets, locking themselves indoors and clutching the Lysol wipes as if they were the only hope, welcome to our daily life… the tribulations of... Continue Reading →
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 →
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 →
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 →
It’s our first day home from the hospital and while I do feel great relief, there is also a weight of sadness plaguing my heart. I know this feeling. I recognize it because I’ve experienced it many times before. It is the resurfacing of grief. The unique thing about having a child with a brain... Continue Reading →
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 →
Hospital life is a crazy life. The pace of the people there is fast but the process is slow. The stakes are high. Reactions are quick and things can shift unexpectedly. Ironically, the hospital is the last place you’d want to go if you actually needed rest. There are rounds, vital checks, meds, meals, treatment protocols, social workers, dieticians,... Continue Reading →
If, five years ago, someone would have told me that I would soon be a person who not only used a calendar, but absolutely depended on one to keep an insanely packed schedule of appointments straight, I would’ve laughed out loud. Calendars were never my style. I was way too carefree and laissez faire for... Continue Reading →
As many children with Cerebral Palsy do, Oliver also has epilepsy. He doesn't have very many seizures but when he does have one, it doesn't stop on its own. Although we have rescue medication that we carry with us at all times, it has never actually worked. So we are left with only the choice to... Continue Reading →
Oliver's Odyssey 