******Trigger Warning: Traumatic Birth******* As she pulled my son from my body, the sound of silence was deafening. That iconic wail of a baby’s first cry was absent from our birth story. Instead, she laid a beautiful, blue-tinged little babe upon my chest and began to rub his limp body vigorously. It was in this moment that our... Continue Reading →
Oh goodness, that is a loaded question! I have more than a few suggestions about how to improve the care from our medical community, but I will try to pare them down to the most crucial points; those that could help support our families in more constructive ways. Name the diagnosis! There is a saying in... Continue Reading →
I am not a person who holds center well. I experience this life with an, honestly, exhausting level of intensity. At this point, for me, dispassion is an unattainable philosophical concept, far outside my reach. And although I’ve developed the ability to see the highs and lows coming, when I am in the midst of them, they are... Continue Reading →
It would probably be much easier to write about the few things that Oliver has not taught me in our time together because the list of his lessons shared, could go on forever. Without speaking a word, Oliver has imparted more wisdom to me than any other person on earth. I consider him to be my greatest teacher. But... Continue Reading →
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 →
The overarching theme throughout this period of my life, seems to be one of wading through the darkness until I find the light. This quest, this lesson that I have yet to fully learn, seems to appear in new and challenging ways, nearly each and every day. Today I had a hearing to determine whether... 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 →
Parenting a medically complex child is not as cut and dry as it may seem. Sure, doctors may be very clear on what “proper protocol” might be, but for the people actually living this life, there are many factors to weigh while making decisions. In the medically fragile world, the battles choose you. And today, we chose to fight this one at home.
Wow!! We won the sleep study lottery today! The hospital called at 3 this afternoon saying they had a last minute cancellation and could get Oliver in tonight if we rushed down to Seattle. So here we are. The 6 hour round trip, a small price to pay, for possible answers that might relieve his... Continue Reading →