Throughout this journey we would like to keep you all updated and share how we are seeing God work in and through Micah and our family. If these were the only thing we shared it could look like things are progressing along fine and dandy. It's really all in how we frame it to you to be quite honest. I would like to be especially real and let you in on how we are framing it to ourselves and coping per se.
Today, Wednesday, has actually been quite intense and stressful and very horrible at times. To sum up our day he has had 3 different nasogastric tubes placed through his nose and into his stomach, he slept 1-1/2 hours of a 12 hour period and has had an intense and painful bout of reflux. Then throw in all the emotions, doctors, nurses, equipment, scheduling and sleep deprivation and you have a cocktail that can produce grumbling, complaining and sarcasm that is fierce.
Once again, to be completely honest I have typed several snappy smart sarcastic comments into my status on facebook only to delete them. Before I decide to share them I take a deep breath, pray and make a choice to honestly answer a question.
How am I going to frame this?
It's always easy to see the irritating and the difficult. These aspects of our situation are real and not easy. They are also not to be stuffed, however they are also not to be dwelled upon. If I continue to rehash the negative I'm going to be hospitalized for my own reflux coming back. Now, will we be perfect at this, absolutely not but we will do our best.
So what's my frame look like?
I'm working to frame our situation in a positive light as much as possible. When I want to slip into a slump of depressing and sarcastic comments and thoughts I am working to start reviewing the good. Framing the situation in the positive. What do we have to be thankful for?
To list a few, I am thankful for:
-My skills as a Behavior Analyst that help me observe Micah and see the patterns of what he's going through.
-Having reflux myself as an adult so I have first hand knowledge of what he is going through.
-Being familiar with the IV and feeding pumps due to what we experienced with Home Health Care for my mom just a couple months ago. (Bummer for my mom but she is now doing pretty good.)
I could go on for awhile and I will at a later date. Now it's super late and I need to sleep.
One more honest reality is that in a perfect world I would have a few scriptures to back this all up to be encouraging to us all.....ya, today I could barely go to the bathroom let alone focus on finding encouraging verses. We are in survival mode. I'm actually typing this to stay awake while a pump is finishing feeding Micah. So if you come across a good verse feel free to pass it on to us.
Now off to sleep til the blood draw person arrives at 4am or so.