I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Monday, May 30, 2016

We Saved the Hole (first Adams Family Hit Song)


So as we processed the edge our seat experience with "saving the hole" in Orson's stomach so he would not have to have surgery again to replace his G-tube, lighting struck our brains with the lyrics to a song that would be the big grand finale finish to part one of the currently non-existent made for tv movie about Orson's life with a g-tube. We titled our future platinum hit song "We Saved the Hole."

LYRICS to "We Saved the Hole" by The Adams Family

We saved the hole
We don't have to have surgery

We saved the hole
We won't commit perjury

We saved the hole
There's no such word as "flerjury"

We saved the hole today
ba dum ba dum ba dum

WE SAVED THE HOLE TODAY!

The title of the song and main stay of the lyrics was inspired by a conversation one day with Orson's surgeon last year. She was educating Orson, Frank, and I about how to "save the hole." Meaning of course to keep the hole from closing if the g-tube ever came out unexpectedly. She repeated the phrase "save the hole," many MANY times in this educational appointment. By the time we left we had made jokes about making t-shirts with the slogan "save the hole" on them, but thought it may come across as lewd or just confusing unless you happened to be a g-tube family.

And yes, Frank and I very frequently discuss slogans for t-shirts because our secret dream is to open up a combo donut and screen printing/clever t-shirt selling shop that would be wildly successful due to our clever t-shirt designs and slogans in combination with fantastic hot donuts.
  
So while the t-shirt shop will contain this shirt someday, in the mean time this song was born and lives in our family now.
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