Tuesday, May 05, 2009


My sweet boy's operative notes make me cry every time I read them.

It's not the mention of general anesthesia, intubation, or suboccipital midline incisions that make me sad.

I can read about prophylactic antibiotics, steroids, and irrigation with relative detachment.

Even the mention of the bur holes and the drill used to open my sweet boys skull and the documentation of sutures and titanium plates used to put him back together don't leave me overly emotional.

But I always have a very difficult time reading, thinking or talking about the seat belts...the seat belts that so very tightly strap him to the table.

Seat belts.

Isn't it odd that I lose my composure over seat belts?

But all of the tools and procedures that are mentioned in the operative report have big, fancy names that sound impressive and curative. The BrainLab navigation system, 4-0 Nurolin sutures, Midas Rex drill, and Kerrison rongeur all sound like instruments of healing.

And the use of seat belts sounds so barbaric.

The reality of Steven's life with von Hippel Lindau disease, however, is purely barbaric.

Because brain surgery, stripped of the fancy names, is brutal. Opening the skull with a drill and maneuvering a blade through brain matter is horrific at the most basic level.

And brain surgery is the only treatment for VHL.

My sweet boy needs a cure.


carole said...

Hi Beverly:
I have to take a deep breath; you and your boy are a hell of a team. One protecting the other protecting the other!!!
I watch his you tube video and hope he wins his trip!!!
Much peace to you both

Beth said...

Hi Beverly,

Ijust watched your amazing son's utube video and I hope he wins! I have never heard of this disease and wanted to thank you for putting the information out there. Good luck with your fundraising efforts. Please know and let Steven know that there is one more person in this world sending positive wishes and prayers your way. :)

Anonymous said...

i feel the same way mom :[ ily mom
love mary


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