Notes From A House Frau IV

Here is baby's first outing to the rink. Yes, the hockey rink. We watched our nephew participate in some faux-Olympics to celebrate the end of his skating lessons and it was just about the cutest thing ever. So much to look forward to, right? RRBB slept through the entire thing, like he does with so much of his life. The odd irony (is it ironic?) of early parenting, how much the baby sleeps vs how little the parents do, his life is so restful when he's not screaming.

The strange obsessive need to clean up and out continues. I know it's a product of the prednisone crazies, and I know it's from being inside the house so much, I just can't stop thinking about how much more I can tidy up and move around. Of course, most of it is just heading into the basement, but that's the last stop before it's out of the house forever. I can barely believe that Christmas is just about ten days away, and that next Friday is Christmas Eve. I know where the time has gone, and seeing the beautiful snow today made me realize that it is really winter in Toronto. One thing I am grateful for right now: not having to commute everyday downtown. One thing I am not grateful for: it's not as easy to get out of the house with the baby for a walk. And fresh air is so important to just being able to keep going.

Tomorrow is a day of reckoning. I went in for some blood work this morning, and I hope it is better tomorrow. I hope with every fibre of my being that I can stay on my current drug regimen, which means we can keep breastfeeding. There's little choice with my life, literally, on the line, I've been thinking positively, maybe even fooling myself, but trying not to freak out completely at how the disease just refuses to go back into remission.

We've had a couple of peaceful days at home. So, I've spent a lot of time just feeding and sleeping with the baby. I've been enacting, purposefully, a measure of calmness, not watching television during the day (and not missing it at all -- if you knew me, this would shock you), reading, writing, making lists, obsessively clearing out stuff, it's all just a rouse to keep my head on straight as I battle the terrifying Wegener's for the umpteenth time. It's an interesting dynamic: raising a new life while trying to hold on to my own. There's so much potential with the RRBB and I feel mine evaporating with every pill I need to keep my alive. I feel dramatic, maybe melodramatic, but I can't just think of myself and the disease anymore. I have to think of my family and how it affects all of us -- husband, son. I often get carried away in just trying to get through the day-to-day with the disease, the exhaustion, the symptoms, the terrifying test results, that I forget that my RRHB has to deal with the disease as much as I do, but in a very different way -- he has to be supportive, kind, understanding, even when he's going through stuff of his own. That would be hard for any lesser person. I am lucky to have someone who gives so much and takes such good care of me, there would be no me without him.

Generally, I meet the disease, and its flares, with a great depression. With anger, rage and a healthy dose of denial, and the disease keeps coming back. I put myself through incredible amounts of stress, which I'm convinced has a lot to do with the Wegener's doing what it does. But in this case, it wasn't my life necessarily, it wasn't my job, it wasn't a horrible tragedy, it was something I was really looking forward to -- having a baby, and so I can't be angry, it won't do either of us any good. I can be sad, and cry, it's healthy, but the anger doesn't do anyone any good. Neither does the resignation. I remember being in my mid-20s, almost flunking out of grad school, looking up horrible pictures of collapsed sinuses, and deciding that if the disease wanted to have me, it could take me. I no longer feel that way. But I do just want it all to stop now. I'm tired and need a rest.