[Ed. Note:  The opinions expressed below are solely those of the author.  They do not represent the opinions of the editor, publisher, or this publication.  Anyone with a medical problem is strongly encouraged to seek professional medical care.]    

I have done 5 brain surgeries on two teenagers this year. Humor is the only thing that keeps me sane.

Things I never thought I would do, say, or hear:

I was wheeling my daughter through the airport coming home from the craniocervical fusion. She is in a wheelchair, two foot long incision complete with stitches and staples, in a cervical collar. Someone comes up to me and says, "is there something wrong with her?".

I have prayed for vomit. When I first learned that Nicole would continue to go down hill until she had her skull fused to her neck, I prayed for vomit. If you have to crump, do it now, let's get this over with. Start vomiting and they will fix you right now. Forget the traction stuff. Please God give me vomit. She started vomiting! How many people get prayers of vomit answered? Wait a minute. How many people have ever prayed for their child to start throwing up?

I have stood in line at the grocery store and envisioned an MRI image of the brain of the person in front of me. I have thought, what do your brain tonsils look like? How big is your cerebellum? Does everything fit in there? Somewhat akin to how one would casually glance at the size of someone's butt and try to fit it into the realm of the bell curve of butt size. Now we won't admit we do this but we all do such things....... It feels normal to look at people heads and envision the brain within. I don't look at people butts or hair any more. Just their brains.

 I have looked at the back of my kids head and immediately thought of Frankenstein. I think she has more stitches in her head.

I have thought of installing a permanent zipper, or some sort of more permanent opening devise to try and avoid the multiple incisions every time they have to go back in. Velcro? Automatic garage door type hatch?

I have lived some scenes of my life that I think are actually misplaced scenes from a movie, and they were not really happening to me. The "stop the plane my child is dying" episode recently comes to mind as my kid was spiraling into a dangerous place fast, just as they closed the hatch door on the plane. We got off the plane and went to the ER. Nicole rapidly dropping her oxygen sats and her eyes rolling into her head in the ICU and everyone rushing in with fury like in an episode of ER. Every bell and beeping devise imaginable is ringing. She only stopped breathing for a short while they say..... This isn't really happening to me........must be a movie. Can I rewind now?

I keep strange statistics in my head that seem normal to me. 23 hours of brain surgery total, (oh...28 if you add in Kristina's surgery). 5 days in the ICU this time, not 2 like the last time, 1 the last two times. 42 stitches. 18 stitches. 5 brain surgeries on two teenagers this year. 25 days without eating. 1 kidney, 3 heart, 4 brain surgeries. What's next?

-- Karen F.

 

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