Friday, June 8, 2012


So how would you define normal? According to, normal means conforming to the standard or the common type; usual; not abnormal; regular; natural.” Let’s focus on the usual, not abnormalpart for a moment. If we take this literally we could argue that your normal (or usual) isn’t the same normal (or usual) as mine, right? It’s all really about perception then and brings new meaning to the quote my normal is your chaos.

Let’s talk about my normal at the moment…

A few days ago we started a Wilbarger and Burpee Deep Pressure Brushing program. Prior to starting the program we had to collect data which is just a fancy way of saying that we counted the number of times things like flapping, meltdowns, and “I don’t knows” occurred. This is probably much easier said than done but between my husband and me, I think we did a pretty good job.  We were fortunate that the therapist who oversaw Caden’s spring occupational therapy play clinic was willing to teach us how to do brushing and the joint compressions that must follow.  Unfortunately I mentioned that I have touch issues so the therapist kindly suggested that I would make the perfect practice model so Dan and I learned brushing and joint compressions on me. The positive here is that I know what the protocol feels like, the negative is that a person who wasn’t family was seriously in myspace touching me…clearly I won’t be volunteering in any of the ot classes on campus anytime soon. The protocol involves 15 minutes of brushing (arms, back, and legs) 4 times a day followed by 15 minutes of listening therapy 2 times a day and joint compressions after every brushing session.  We’ll do this for 3 weeks and then develop a maintenance program.  Thankfully Caden really loves the brushing and the joint compressions…listening therapy isn’t as big of a hit at the moment. But at least I feel like we are really doing something hands on (literally) with the brushing and joint compressions.

This week we also traveled to Mayo to see a GI specialist about Caden’s ongoing stomach pain.  He is having an ultrasound of his insides on the 15th followed by surgery on the 18th. There’s concern about one of his stomach muscles as well as the possibility that he isn’t producing all of the digestive enzymes that he needs. He may also have some undiagnosed food allergies—unfortunately the immune deficiency means that he doesn’t respond to allergy testing in the “normal” fashion so that is rarely useful.  Now this would be dramatic enough if we didn’t include the fact that Caden’s sister is having a catscan on the 11th followed by major surgery on the 13th, also at Mayo.  Seriously my kids can’t even let one have surgery without the other trying to pull a one-up.  Ironically I thought a 6 year difference would mean that they wouldn’t fight…..are you done laughing yet?

Then there’s work—summer is research, write, and publish season for those of us in academics because we don’t have time during the “regular” year.  Of course you can add in school board responsibilities and yard work and everything else that just needs to get done as well as a service dog who has food allergies that give him ear infections, another dog with an ulcer (an ulcer…seriously?), and a cat with irritable bowel syndrome (all I can say is seriously…..are we becoming the gastrointestinal disorders home for all living being?). This folks is our version of normal.

So is it normal?  I suppose by “normal” standards this would be considered chaos. By our standards it is pretty darn “normal” though. And we’ll get through it in our “normal” fashion. I’m online shopping for positive reinforcement otherwise known as bribery. My mother who lives many states away is on her way here to help with post-op duty thanks to my kind husband who is driving the round trip to make it all happen. Insomnia is allowing me to practice for the sleepless nights that pain and post anesthesia recovery will mean.  I’m nervous and anxious and ready for it all to be over but I also write this from the perspective of a parent who has already watched her daughter endure 13 surgeries and her son 4.  It doesn’t get any easier but eventually the chaos does become the norm.  

Now what doesn’t become normal is the fact that Caden’s airplane is stuck on our roof. Apparently there was an “incident” involving him, his sister, and the trampoline that ended in the airplane being stuck on a part of the roof that a ladder or rescue efforts won’t reach.  We were hopeful that wind would be our friend but it just seems to have blown the airplane UP and over to the other side of the roof. It is also “possible” that the airplane is now stuck in an upper level gutter that we can’t quite get to.  Now that folks is causing some real drama in our household.  Caden’s tale is currently on plane watch 2012 and we’ll keep you updated….