It's been 53 weeks now. Seems longer, so say the bags under my eyes and the gray hairs appearing on my head. Seems shorter too. What can I say? On the surface not much, what with the thoughts that seem to scatter around my brain then escape with barely a memory of their presence. A wee bit tired I reckon. I want to share some reflections of this year however, so please humor me. And please be patient...
I love taking care of Drew during the day while Karla is at work. It is challenging and it requires all of my energy, and there are times when I'm barely holding on physically, but I love it. Drew and I share the bond of father and son, but we also share the bond of our illness (whatever that illness is). Any parent will tell you that having children will change your life in many ways. A major change is the inability to do all the things you used to do in the time you used to do them. Obvious statement.
Drew requires our visual attention at all times. Because of his tracheostomy he is unable to vocalize. In some ways that's nice as we don't have to experience any bloodcurdling screaming in the middle of the night. Problem is that every time Drew cries he is at risk for holding his breath. So we can't let him cry, but because we can't hear him we have to watch him. Luckily he follows me wherever I go anyway so watching him isn't much of a problem (like his mommy Drew considers me his hero...). Drew still holds his breath, "an episode" as our medical team like to say, 4-15 times per week no matter how much we watch. Each of these episodes is life-threatening. That might sound overly dramatic, but there is no other way to state it. Every time Drew stops breathing, goes blue, and does his bit to go stiff and sometimes have a seizure, we wonder if he'll breathe again. So far he has, although with varying degrees of prompting.
Major life change, no? Fortunately as parents we don't know anything else. Drew is our first child so we have nothing else to compare t0. The comparison game is a risky bit of business anyway so I'm better to do my best to steer clear of that (although wandering that road has it's way of reminding me of just how blessed I am). It's still hard though and sometimes I bemoan my lack of freedom. This happens especially if I compare this reality to what I thought having a child would be like. Then the burden of this reality can feel like prison (yikes, who dialed up the self-pity?).
As a Christian I think about freedom differently, at least I should. Freedom isn't the ability or right to do whatever I want. In fact, that's just another form of slavery. For me freedom is losing myself and gaining Jesus Christ. Then my freedom isn't in doing whatever I want but in responding to what I have received, which is life! So even though caring for Drew takes everything we have, we should look at this as an opportunity rather than a burden. As much as that sounds great, the truth is we don't have much time or energy to think about it. At least if we have the proper attitude we're hopefully on the right track.
Yup. Almost definitely mind numbing. Methinks blogs are better suited for pictures rather than random introspection. Who knows? Not me, I'm too tired...
db
