Sunday, November 17, 2013


Sometimes, I don't realize how hard things are until they get easier. And sometimes, I don't recognize they've gotten easier until they just have and I realize I have time to breathe again. 

Such is the case with Bo. My last update on our lives with him was pretty raw and real and filled with angst. Since then, he's made some significant progress and our lives have gotten easier. 

He's learned to respond to the word no. He doesn't always obey, but a firm No is often enough to buy us some time to get to where he is and prevent him from inflicting whatever damage he had his mind set on at the time. That few seconds of borrowed time has brought a huge sigh of relief to our home. 

With the added visual cue of an outstretched hand, he responds to, "Come here." Not having to physically pick him up every time we want to change his location is such a gift. He will now willingly come to the dinner table or to get a diaper change and those things sound so small, but it's those little things that add up to making big changes in our world. 

So many other things are clicking with him, too. He's started eating with utensils which is HUGE! Not every meal or for the whole meal, but more often than not. He still makes every bit as big of mess as when he digs in with both hands, but we don't care. We have been working on this for months in therapy and always provide utensils for him at home. Every meal, we initiated a couple of bites with hand over hand and every meal, he chucked the spoon at his first opportunity. One day, he just didn't and ate two bowls of chili with his spoon while I stabilized the bowl and the rest of the family cheered like crazy. 

He started attending developmental preschool three afternoons a week which has been so good for him, too. I took him for his pre-surgery blood draw recently. After waiting for what seemed like an eternity, they finally called him back. There was a child-sized table with a coloring station set up and he immediately climbed into the chair. I cringed expecting him to take big handfuls of the crayons and start flinging them or sweep everything off the table with his arm as he is wont to do. But, he completely blew me away by grabbing the nearest crayon and scribbling on the picture. Amazing! (Two minutes later, when the lab tech distracted me with questions, he took big handfuls of crayons and flung them, but still...)

Speaking of surgery, tomorrow is a big day. Bo is having a tympanomastoidectomy (ear surgery) due to a cholesteatoma which was discovered when he had tubes placed in September. He will have an overnight stay at Peyton Manning's Children's Hospital which will be a new experience for us. Shawn will be staying all night with him which is the right choice given their bond, but a tough choice for this medical nerd and control freak to handle. 

It is always hard to hand your child off to an anesthesiologist. It's especially hard when the bond of trust between you is new and feels so tenuous and you know he will wake up frightened and in pain. He usually tolerates pain pretty well. He does not, however, tolerate oximeters, bandages, blood pressure cuffs, IVs, wrappings, and strappings of any kind and he will have all of those. He has been known to remove coban around an IV with his toes when a nurse turned around for five seconds, so prayers in this regard are greatly appreciated. This is one of those surgeries where the potential risks are the same as not having surgery, only much less so. We know it's the right thing to do, but it's still hard. 

So I guess the increase in function has made things easier in the day to day, but what we risk in the loving, that only gets harder as we have to let go a little bit. 

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