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 →
Energy Drinks and Anger
Sometimes in life, you encounter mud. Icky, sticky Mud. To borrow a few lines from one of Oliver’s favorite books, “Can’t go over it. Can’t go under it. Can’t go around it. Got to go through it!” And indeed, we have been going through it. In late May, Oliver caught his first virus since the... Continue Reading →
For families like ours, being judged, shamed and criticized about the decisions we make for our children is an unfortunate part of our daily life. And you know what? I can’t say I blame people for that, because most people dwell comfortably in a world of absolutes. This is right and that is wrong. This is natural and... Continue Reading →
Don’t Forget to Play
Last night we decided to set the evening routine aside and drive up the mountain for a sunset picnic and an opportunity to just breathe. We have been absolutely entrenched in the hussle lately. Finishing our yurt and moving out of our house has proven to be quite an epic feat. But we’ve been unbelievably fortunate to... Continue Reading →
Oliver’s Birth Story
******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 →
HIE Awareness: How Can Care be Improved?
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 →
And Just Like That… Life Begins Again.
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 →
What Has your Child Taught You?
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?
Advocacy in Action
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 →
Just Before the Dawn
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 →
Darkness into Light
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 →