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 →

Breaking Free

About a year after I created  Oliver's Odyssey, I found myself at a backyard barbecue with a women I’d never met. I was telling her about this blog, the story behind it and what it meant to me.  When I finished she laughed and said, “Well, I think it’s kind of funny that you call... Continue Reading →

The Devil of Dystonia

For the first five years of Oliver life, we were able to find work a rounds for many of his physical limitations, essentially sweeping under the rug the level of his disability. When we wanted to hike, we threw him in a baby backpack. When we wanted to travel, we changed him on the baby... 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 →

Growth Attenuation

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 →

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 →

Inchstones

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 →

Seizures & Santa Claus

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.

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