Wednesday, July 27, 2011
Deborah & I were talking the other day and she was telling me how her perspective has changed. I told her she should write about it. This is what she posted on her facebook account. In the T18 world it has been shared many times as moms have remarked on how she expressed herself so well.
Normal is defined by what you are used to. This means that everyone's perception and definition of what "normal" is is different, or so I assume, since I've yet to meet a single person who's had the exact same experiences as another and had the same impressions, perceptions, thoughts, etc. Anyway, my conclusion to all of this was that it was perfectly "normal" to be different, and rather different to be "normal". This is how I've defined normality for a few years now. And while that hasn't changed, it had never once crossed my mind that there could be more than one distinct normality per person.
Except that's what happened to me. I have two normalities, two very distinct halves of my life that are somehow simultaneously separate and connected.
I have the "normal" life that most people I know have. You know, the one with friends, work, school, church, and everything else that goes with the day-to-day stuff. It's the same one I've been living for the past 19 years, nine months, and 10 days (not that I'm counting or anything). There's been change, of course. Friends have come and gone. I've come and gone. Memories have been made, some much easier to remember than others. It hasn't all been constant, but the basics have remained essentially unchanged.
Then there's the other half, the other normality. This one was born February 14th, 2010. That was the day that I found out that my beautiful baby brother was not going to be "normal". He had something called Trisomy 18 (he had three of the 18th set of chromosomes). The doctor called it "incompatible with life". I was in shock. So was the rest of my family. It was such a foreign concept to me. I wondered how we'd ever explain to my then three-year-old brother that his baby brother that he was so excited for might not be on Earth for very long. I never did figure it out. After a while I just stopped thinking about it. It was too hard. Not too long after that, on June 13th Aaron Noland Peterson was born. And the new "normal" that had started to take shape became more of a reality.
The piano room became Aaron's bedroom. The piano's still there, but it looks like something of a cross between a hospital room and the room it used to be. It's hard to imagine it as being any different from how it is now. There's a ventilator and a long, tall stand that holds his food and some humidifiers. There are a bunch of monitors that measure his heart rate and oxygen saturation, among many, many other things. There are a ton of other medical things that help us keep Aaron alive and well.
The bedroom's the least of the changes. As time has passed I've learned a lot about taking care of him. I still leave the trach changes to my mom, but I know how to suction him to help him breathe better. If given instruction I can give him his medicine and his food. I know which of the alarms means there's trouble just by listening; I can tell when I need to go check on him, and when I need to call for Mom, and when I can just leave him alone. I'm used to the sounds of the ventilator and find it strangely quiet when it's not going (which means he's not home for one reason or another).
Perhaps the biggest change, and the one that's the most difficult to communicate effectively, is that it isn't too uncommon for both my mother and Aaron to be in the hospital. It hasn't happened so much lately (knock on wood), but it's happened enough that it just doesn't bother me anymore. In fact, I've found that it's people outside the family who get super worried. And that's where it gets hard to explain. See, it isn't that I don't care. It's just that I'm used to it. It's a new "normal", and so it doesn't bother me much.
And those people who start to freak out about it and get all worried, well, sorry, but it doesn't actually help. Please, by all means, be concerned, pray for him, be there for my family and me. Just don't freak out. I'm not going to suddenly break down and become unable to handle life. I'm past the shock and personal issues that came with dealing with something like this. It's "normal". Let it be my "normal", or at least part of it. It is what it is. There's nothing that's going to change that.
To be honest, I wouldn't change any of it, even if I could. Back in February when I was first trying to work through this I think I might have, given the chance. But not now. Not ever. I've learned to live with it. To be honest, I never really gave myself any other choice. I didn't see giving up or not living life the way I wanted to or not keeping as much of my other "normal" intact as possible as even being an option.
So I kept going. And I'm going to keep on going. Because as much as having two normalities can be confusing at times, I wouldn't trade it for the world. This is what I'm used to - two different "normals", two halves of one reality that is mine, and mine alone, though I may share parts of it here and there with others. This is me. This is my reality. These are my perceptions. This is my "normal".