I don’t use that word lightly.  I’m not just exaggerating or whining about how long our days and weeks and months have become. No, I really mean it: I can’t clearly see an ending.

This blood pressure issue, while a minor sideshow to the grand drama of Austin’s cancer, is one of those sneaky things that is going to follow him — and us — forever and impact the rest of his life.

He’s had high blood pressure since all this began nearly three years ago.  It’s due to the damage his kidneys have withstood (or not withstood). The real bummer is that hypertension is both a sign of kidney damage and a cause of kidney damage. In order to keep that little partial kidney as happy as possible, we really need his blood pressure in a perfectly normal range all the time. Which never seems to happen.  Now, even with the addition of another medication, it’s still running slightly high. And the manual cuff I have at home is frustratingly difficult to use, so Mark just ordered me my very own (and very expensive) automatic blood pressure machine. How’s that for a nice Mother’s Day present?

And then there’s the near certain failure of that kidney. I am so hoping we can make it at least a few months into the post-treatment period before dialysis. Just to give us a much needed break without the two things overlapping. Of course, I really want it to last the full two years, but that seems less and less likely each day as his numbers creep in the wrong direction, one slipping down that we want to stay up and others jumping up that we want to stay down. He has another GFR on May 17 so we’ll see if it’s managed to hold steady at its new low or if it’s dipped into the this-is-really-happening, time-to-start-dialysis range.

And then there are all the other risks far down the road that will trail us for years to come. Assuming a transplant goes well and this cancer doesn’t return, he still has a high risk of developing a secondary cancer, probably leukemia, from all the radiation and chemotherapy his body’s been subjected to.

I hate the idea that his life might not be normal. That, more than anything else, is what I wish for both my boys. Not super fabulous, not spectacularly extraordinary, just normal.  So he can be a kid and go to school and learn to read and play kickball and ride a bike and have a girlfriend and go to college and live by himself and get a job and see the world and fall in love. So he can be a dad and then a grandpa. But some days I feel doubtful that all those things could ever happen. The thing I fear most is, well, it’s The Thing we all fear most. But the thing I fear second most is that he gets so bogged down by all of this, so burdened by lifelong health problems, that he someday says to us, “Mom, Dad, why did you bother? Why did you work so hard to save my life when now my life sucks?”

I know it seems unlikely. Not our joyful little Austin, who never lets anything get him down, who still runs and leaps and climbs and rides, who manages to squeeze joy and laughter out of each and every day, no matter the horrors he endures . . . our happy little Austin would never say such a thing. But I worry nonetheless. I worry it will be never-ending.