Surgery Day

Driving to the hospital in the dark this morning, it felt as if I were living in a dream.  Words fail to describe the many emotions of a mother embarking upon invasive surgery for her child, while knowing full well that they do not grasp the gravity of what is about to happen.   Each... Continue Reading →

Pre-Surgery Musings

Tonight, as I bathed Oliver for the last time at home before his surgery, I marveled at where our story has taken us.  The irony of this journey is that it has molded me into a warrior.  I have become accustomed to the many battles.  But it has also cracked my heart open wide, exposing... Continue Reading →

Can I Just Opt Out?

Well, we gave the go-ahead to Oliver’s surgical team to schedule his Baclofen Pump placement procedure.   Ever since I sent the email I’ve been consumed with anxiety and second-guesses.  I know he’s having to work so hard  now to fight the dystonia and spasticity.  I hear him gasping for air because he is writhing... 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 →

Epilepsy – The Shape-Shifting Beast

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...

Life Flight

As much as I hone my writing skills, I don’t believe I will ever be able to fully capture in words, the beautiful tragedy of the medically complex life.  Most outsiders would see only the suffering and the limitations. But what is missing from that perspective, is the striking beauty and unique opportunities that stand... Continue Reading →

Corona Virus… Maybe Now They Will Understand

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 →

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