Wednesday, November 30, 2011


Warning: for the possibly one person who has checked back now and again to see if we have fallen off the grid (we have not), this blog may be coming back to life. It may be awakening a different beast than it went to sleep though. For instance, this beast says fuck a lot more so if you're not comfortable with that you may need to cover your eyes from time to time. You see, I am not the mama of a struggling baby boy with CP, or the mama of a special needs son and a new baby girl trying to do it all with glitter on top anymore. I'm the mom that has tasted the agony of new moms crying on my shoulder because that used to be me. Fact is, that old me who was so terrified, learned so much that now I get to pass it on. Fact also is, I am no more comfortable with the road ahead of me right now than I was with the road ahead of me seven, six, or five years ago. But I'm harder. I'm tougher to sway. I know what I am fighting for and I will fight for what really matters for as long as it takes. I also know that what really matters is not all that I thought it is to be.
So while this place is still Life with Ben, it could be called Neither Rhyme Nor Reason, or There Are No Rules, or There Is No Such Thing As Fair, or We're Just Making It Up. It's not all about Ben, or Kiera, or Dave, or even me. As the writer, a good deal of it is about how I feel about all four of us though. This is about how we have evolved into this extraordinary thing. This family that yells, and plays, and loves so much. Goodness we are a disaster. A mess of a perfect disaster and right in the middle is me, the grand master of of this mess (it's OK, Dave would want to claim the non-mess part). I, my dear am a mess. Not the mess I anticipated either. I thought that I would be the kind of mess that was covered in paint, not the kind of mess that didn't have her shit together at age 38. It seems utterly impossible that I am 38 and things refuse to settle down enough to catch hold of. And for the cherry on top, I have had two seizures (totally my fault-meds don't work if you don't take them) in the last year. My health being at risk puts a pretty huge crimp in the already crimped family health dynamic. The last one was a bit dramatic and has prompted a four month long med change. Med changes are no good for anyone, least of all me.
So here we are, Ben is going to be nine. Nine years old, and Kiera will be six and it has slipped past in a dizzying array of appointments and therapies and classes and play time. It is truly no wonder we walk around looking dazed, its is whiplash. Whiplash with a heartbeat.