Friday, January 24, 2014

Merry Christmas, Happy New Year and Happy Year of the Horse (a little in advance)!

When I am struggling with fear, uncertainty and pain, I remind myself that the person whose body is affected with a life threatening condition is my child. It takes my breath away. But before I discount my own pain, dismiss my ability to understand what my son or my daughter are experiencing or the excruciating discovery how this disease impacts our lives on the daily, I want to share an embarrassing moment, I know everyone can relate to.

There were no conference rooms available, and I had the misfortune of quiet morning with my coffee, Pandora and laptop destroyed by meeting invitations. They piled into my calendar with silent efficiency, one after another, back-to-back. But it was snowing and short notice. So my boss and I hastily regrouped in our senior director's office. She was out sick, and her office had a door. But this meeting had been called by a scientist, and she had forgotten to send a dial-in number. So I tried calling the conference room. At this point, we were 12 minutes into a 30 minute meeting, and I had another meeting lined up. So I called IT for the number. After more minutes of back and forth, she still could not find it. I spent a few minutes asking WHY WHY WHY she couldn't find it, after which, my gentle giant of a boss started pacing. After a pause he quietly stated that he did not understand why I would speak to anyone in that tone. And as the thoughts of protest formed in my mind, I flushed with embarrassment. There is really no excuse for poor behavior.


Yep. Never too old to learn. Not even a simple lesson I thought I had nailed. Nope. Never too old to fail.

So, you got that one, right? See, putting yourself into my shoes isn't that hard.

So when Bo decided he wanted to participate in the Children's Christmas Eve Mass, I did not say no. Having a little skin in the game builds empathy. And practicing Active Love, only means he will get better at being an Active participant in our church family, and the greater World Family. After a long day of celebrating and the excitement of reading Prayers of the Faithful to a packed parish, I was a little sad to see how exhausted Bo was, but not overly surprised.

We hustled the kids to bed and started frantically wrapping gifts. We were scheduled to fly out at 7AM, and were looking down the barrel of an all-nighter. But by this time Bo was thrashing around, moaning in pain. And it went from the most beautiful night of my sweet boy leading our parish in prayer, to me on my knees, praying he was not being attacked by bacteria in his blood stream. I took his temperature, cursed myself for not having a blood pressure cuff in the house, and took his temperature again. We made the call to stay home at 2AM. He was in pain, and we were not going to travel under those conditions, clinical signs (all normal) be damned. Turns out, he had a massive ear infection that burst the ear drum on Christmas Day (Oh, Merry Christmas to you, too).

But the miracle, the Christmas present that no one counted on, was that even though we had to cancel our trip, we would celebrate a cozy Christmas at home. The kids would get to their stockings on Christmas morning. And Bo's every morning vomiting would stop. Just. Stop. Whatever it was that changed (there were several changes that the doctors prescribed all at once in the interest of managing Bo's pain and stabilizing his blood chemistry), he has been emesis-free for the longest period of time in three years.

So let's break it down. We cancelled our trip to Disney (boo). Bo had an ear infection (boo). We went to Brown Couch after all (yay). We got to celebrate Christmas at home (yay). And my son volunteered to participate in Mass (double yay). And after all the dust settled, Bo's vomiting has ceased (oh, please! Let's all Praise the LORD!!). I'm most grateful for something that most parents will never ever experience (daily vomiting), which seems foreign, until I tell you that it's like potty training. You spend years wiping someone's rear-end, every day (in fact, multiple times a day). And then one day, you realize that you are doing it less. And then not at all. And you are all about Praising the Lord! See? Not that hard to relate to.

And while we're on the topic of eternal gratitude, I'm reminded by actively participating in a Facebook support group, that Bo's Omegaven status, his private duty nursing, and the school nurse hired to shadow him are incredible gifts. There are kids out there who don't have any of these life-sustaining medicines or support, not because they don't need them, but because they don't have the same resources that we do (my job's private insurance, my state's Medicaid Waiver, our school district's awesomeness). So if you've read this far, or have been following us all these years, please join me in sending a prayer, or positive vibes to the Great Universe, or meditating in Peace, that the other kids who need love, support, nursing and Omegaven get all those things and more. We couldn't do it without you.

PS, as shout out to the Save the Waiver (Illinois)! The Medicaid Waiver was SAVED and medically fragile kids can continue to receive private duty nursing and support at home.