A while back, I wrote an Instagram post about how a child’s diagnosis can totally waylay a family’s hopes and dreams. It’s easy to lose faith that you’ll ever get back to any version of the life plan you had envisioned. I’ve pondered this very subject for 5 years now. Will my life ever again be filled with things that were once pillars of my dreams? Or is it only insurance battles and disposable diapers for me from here on out?
Today we have, what I hope will be, our final court hearing to overturn the insurance company’s denial of Oliver’s g-tube supplies. I’ve been embroiled in this battle for months and I am very much hoping that the judge can see what an unnecessary waste of time this entire thing has been for all parties involved. ... Continue Reading →
We’ve spent the last month balls-to-the-walling-it in a manic attempt to clear a build site, put up a yurt, and move it by spring, so we can rent out our house to make ends meet. What can I say? It was a rough year to try to make it on our own financially… or in... Continue Reading →
No matter how much thanks you give for a good fortune, it sometimes only lasts so long. It seems that we are now joining the ranks of the more seasoned epilepsy families. Today was yet another seizure day for Oliver. His 6th in the last 2 months. It was mild but long. Just like on Christmas Eve, he seemed to be under a spell, watching an aura, feeling something strange but almost pleasurable. Like maybe that feeling of losing your stomach when you go over a whoop-de-doo on a hilly road. Or maybe it's more like watching the wonder of the world unfold on magic mushrooms. Maybe he's meeting the Buddha. Who knows, man...
2020 has been a year of unprecedented occurrence. To varying degrees, the virus has affected us all. It’s led to isolation, loss of livelihood and in many cases, loss of life itself. Families ripped apart, so many have suffered deeply. Fights over equality, politics and government control have left gapping wounds in the unity of our people. There is no... Continue Reading →
We have been in and out of a many hospitals in the five years since Oliver‘s birth and each of them has had attributes that I have very much appreciated. But I have to say, our new medical home, Seattle Children’s, has it all. Friendly staff greet you when you call to schedule appointments. They... Continue Reading →
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.”
I like to write posts with silver linings, as much positivity as I can muster and also messages of hope. But I’m a little short on all of those things right now so instead, I give you my raw and unfiltered experience, in hopes that anyone else struggling might find solace in the knowing that... Continue Reading →
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 →
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 →
For me, the strangest part of having a non-verbal child, is not really knowing who they are and what they think. Sure, on many levels, I do know Oliver. But as his little brother Nicco grows up before my eyes and I hear the speech that flows from him so naturally, it reawakens the burning questions slumbering in... Continue Reading →
It has been said that the grieving process is like peeling an onion. As each layer falls away, it gives the gift of deeper understanding and also reveals the next level of processing. The stages don’t go smoothly from 1-5… denial, anger, bargaining, depression and then acceptance. They are interwoven and revisit you many times even after... Continue Reading →