Monday, March 01, 2010


So I've been neglecting this blog for a couple of weeks. I swear to God it wasn't intentional. I hope I've earned the privilege to swear to The Big Kahuna since I've been dealing with Him/Her/It (or my Higher Power as the Big Book calls it) on a daily basis since we last met, asking for help in keeping my paws off those bottles of fermented grapes. To be quite honest things have been much easier than I expected. In fact way much easier. Until today.

At the moment I'm staring at a half empty bottle of Diet Dr. Pepper to my right and a half (or less) empty son to my left. It's a little after 10PM - only about 10 more hours until Joan arrives for her shift. How's that for symmetry? As Robert Frost would say I've got "miles to go before I sleep."

My plan is to save the hard stuff for later when my mind begins to wander over to that dark place where only overnight hospital visits beckon nightmares from exhausted parents...or when I begin to nod off. Whichever comes first. Shall I name my poison? Try genuine pure grain totally caffeinated Dr. Pepper. According to Gene Simmons of Kiss, it's doctor's orders.

In all seriousness Ben had a rough weekend. After a bit of a cold early last week he seemed back to his usual happy smiling self by Friday which begged for an invitation to venture out with his family Saturday. Late in the morning with unusual springlike temperatures for this winter our boy began to purge whatever happened to be in the vicinity of his small stomach. Again, perfect Waddell family "symmetry." And even though X-rays haven't confirmed it yet we are fairly certain he still has most of his major organs.

Given that attempts to help him digest any of his seizure medicine failed miserably and that his little gas tank was sitting on empty our little man was at the point of complete physical exhaustion. So here I sit in room 6519 of the Greenville Childrens Hospital late on a Monday night just a few days after I bragged to friend about how well Ben has weathered this untypically cold wet winter here in the south. Have we discussed symmetry yet?

Excuse me for a few minutes while I stretch my legs and crack open a bottle of Docteur Poivre. You know, I really really wish I had just a couple shots of Jack the moment...

12:35 AM (March 2nd)
Just for the heck of it I checked the weather for tomorrow morning. Two to five frigging inches of snow! In March! In Greenville, South Carolina! Seriously, WTF? We're gonna be stuck at the hospital watching it snow. Three Christmases, three Thanksgivings, one July 4th, and numerous birthdays/anniversaries have been spent here. Never a frozen event though. Oh crap...I just thought of something worse. I'll be stuck here with hospital cafeteria food and no alcohol. This just sucks!

1:35 AM
It didn't take long for one of those "higher power" moments to hit me like a "two-ton heavy thing" (just for Queensryche fans). For some reason I saw a few comments had been added to my last post from February where I admitted my alcoholism. If you haven't figured it out yet betwixt the joking and delirium of non-sleep I am seriously admitting how much I'm feeling sorry for myself and the predicament I find myself in at the moment. In fact let me just go ahead and yank that wild hair by the root: I am really really really looking for an excuse that will allow me to hit the liquor store on the way home tomorrow. Please note the number of times I typed the letter "i" in this paragraph.

Thank you my sweet dear friend, Kyla! Her most recent comment sent me here. I found myself absolutely mesmerized by this woman's blog so I kept reading until getting really interested in one particular guest post. It was as if I were reading my own little journal about drinking (except for the fact that some of my family have already been hurt) so it made sense to follow the guest over to her own blog. Ever have one of those moments when the really really really huge world becomes really really really small in an instant? And have I ever told you how dearly I love my blog friends?

Forgive me all of you who I honestly care about but haven't taken the time to catch up on your lives recently. The kindness just from today? Sympathy from Tanis, encouragement from Corina, direction from Kyla, and perspective from Maggie.

2:55 AM
The free coffee available for parents on the floor would make a decent paint thinner. My nose told me so but my taste buds decided we needed a brief additional side trip on this adventure. Trust me, I'll get back at them later this morning when we hit the breakfast buffet downstairs. My guess is that the coffee serves as an added income stream for the hospital. Just about the time Junior is ready to go home after his recent appendectomy, Mom checks in down at the ER with a suspected ruptured colon.

Here's some more quality information about this hospital especially for you ladies: keep on your toes when sitting on the toilet. With the amount of soda I've ingested the past 12 hours the trips to the loo are more frequent than I would like given the situation. Every time I flush I fully expect to be pulled into a Black Hole (no crude analogy intended - either time). That would definitely suck literally and figuratively. Also the damn thing is very loud - so loud in fact that I have to put my hands over my ears while hoping not to screw up the space time continuum thingie. And this from a guy who use to sing for this heavy metal hair band.

4:15 AM
Joan always endears herself to the hospital staff and specialists by presenting a spread sheet entitled Ben at a Glance. The title itself is a bit of a joke to us now since there's way too much information presented to absorb it in a glance. What started as a quick print off of medications, vital stats, and insurance providers has become a 6-page short medical biography of Ben. Anyone whose had to go through any type of admittance to a medical facility will know how handy a list like this would be.

I've spent the past hour or so looking over it. Even after ten years it blows me away how much our son has been through in his short time with us. One of these days I'll find a way to post some of these pages here but here's a brief summary:

  • This is Ben's 13th official hospitalization including the initial 3-month stay in the NICU.
  • He has endured 12 surgeries or procedures requiring general anesthesia. Some of them are a tracheotomy, a shunt placement, a G-tube insertion, a cleft palate closure, and at least two airway reconstructions.
  • At least 32 major medical tests have been performed on him. These include multiple X-rays, MRIs, CT scans, EKGs, EEGs, upper and lower GI studies.
  • Ben is currently in the care of at least 13 doctors most of whom he only sees once a year.
  • Even though we know exactly his diagnosis (Tetrasomy 12p otherwise known as Pallister-Killian Syndrome or PKS) one full page is dedicated to anomalies or physical abnormalities which may or may not be associated with it.
If one were to spend some time reviewing this spread sheet the conclusion might be made that you know Ben pretty well. That would not be the case. The 6 pages of facts about Ben only shows the courageous strength and determination he has to live life as fully as he possibly can. They don't reveal his intelligence, his compassion, his humor, and his joy that more completely define his character.

Despite that most of these hours spent with my son have been watching him sleep my personal desire remains to be more like him each and every day. I said it before and I'll say it until my last breath here on Earth, Ben truly is my hero.

Good night...or rather good morning everyone!


Corina - Down to Earth Mama said...

Hold on...... hold on.....

I will be thinking of you.....

Kyla said...

How is it going today, Bennie? I was reading this last night on shift at the hospital...wishing you were at MY hospital so I could stop by for a chat.

Ben and Bennie said...

Oh man! How cool would that be??? After a few hours sleep I'm feeling much better. And truly I REALLY appreciate you pointing me toward Stephanie's blog. It was eerie how all of that fell together! I seriously needed that read at that very moment.

Christina said...

Hang in there, dear friend. Both you and your son are in my thoughts.

Mama Deb said...

Just stopped in to see how your family was doing. I hope your absence is only for positive reasons.
Thinking about you all!