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Here we go again. There’s something about having a procedure postponed that takes away a bit of the nervousness surrounding it and replaces it with a feeling of let’s do this already.  It happened to us back in September/October of 2007 when Austin went in for a major surgery to remove tumors off his left kidney and we were all so worried, but after they put him under and opened him up, they discovered an infection inside him and delayed the whole thing by a week.  By the time that long in-patient week had passed, we had forgotten much of what scared us about that risky surgery and just wanted to get it over and done with.

So, I think that’s how we feel about today’s MRI. Let’s do this. Give us some information already, point out the path ahead.

Just in case you felt stupid after reading last week’s post about anesthesia versus sedation, know that I had to google the official difference between the two.  I should know, because Austin’s done both many times over, but when I tried to explain it to anyone I realized I couldn’t do it accurately. All I could have told you for sure was that anesthesia takes place in Peed Surge (pediatric surgery) on the 2nd floor and sedation takes place on the 4th floor in the let’s-be-very-clear-here Sedation Unit. I do know that Austin has more trouble coming out of anesthesia than he does coming out of sedation.  After being sedated, he usually feels groggy and disoriented for about five minutes.  With anesthesia, that grogginess and the nausea that accompanies it, can last for an hour or more.

He will also have a breathing tube inserted as is common practice with anesthesia. This is the crux of why they’ve opted for this route over sedation.  With both, your airway can partially collapse, which caused the worry over Austin’s breathing last week. Being intubated will obviously take care of that worry (and give him a very sore throat afterwards).  So, needless to say, we’re in for a long day today.

But not quite as long as it was going to be.  He was originally scheduled to begin at 2:30, after going on his field trip, which his class happily changed to a popsicle-and-jello-only event.  But just yesterday, I got the call that we should now arrive at 10:30 (you should’ve seen my face as I was listening to my doctor’s message that started with the words, “Austin’s MRI has been rescheduled again…”). So I’ll shortly be waking the boys for an above-mentioned healthy breakfast (yes, they’ll both be eating popsicles and jello for breakfast) which must be safely consumed before 8am. Then Austin will head off to the playground for one hour, with no food or drink in sight, before Mark and I bring him down.

And then, well, then it will be a long day of waiting, I’m sure.  I’ll be bringing a laptop to type more stories from the Fairfax students, which is what I’ve been doing nonstop for the past few days. Sixteen volunteers came to the Typing Party on Monday night at Lake Erie Ink and we plowed through at least half in three hours.  But that leaves an enormous half stacked here on my couch, which I’ve been foisting on innocent bystanders who are too guilty to say no to me.

And hopefully, some answers. Please go back here to remember exactly what to wish for. Being in a state of limbo has been, as you might imagine, exhausting.  But I stand by the fact that if the news is bad, I’d rather it be delayed as long as possible.  I mean, think about what limbo actually means: you’re stuck between heaven and hell, not sure yet which one you’ll be condemned to for eternity.  I’ll take limbo over being condemned to hell, that’s for sure.

But if the news is good, bring it. I’m ready for that.

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You’d think we parents would learn after a while that so many of the things we worry about regarding the development of our children seem to eventually just resolve themselves. I remember fretting over the fact that Braedan was the last kid in his playgroup to learn to walk.  This was a wonderful group of moms I’d meet at Heights Parent Center when our first babies were just a few months (and sometimes just a few weeks) old. We started getting together multiple times a week, mostly for ourselves (it was way more about the moms than the kids back when they were still babes in arms), and collectively watched as each child learned to sit up (Braedan last), crawl (Braedan last) and walk (Braedan definitely last). There was nothing wrong with him; he was simply content wherever he was placed — happy to look around or play with whatever toy was within his reach; he truly had no need to move. But right at that moment when I started worrying aloud to Mark (“But, honey, they can all walk. Even the ones who are six weeks younger than him!”), he walked.

Of course.

And so it has gone with each and every stage, and so it continues to go. Austin, whose shyness I was so worried about just a few months ago, has completely opened up. He’s not broadcasting his every move to strangers, but he has ordered his own meal in a restaurant and occasionally says thank you to the moms hosting him for playdates. He started his Pre-K year today, without a moment of hesitation. He let me walk out that door without shedding a tear, a first that’s been a long time coming.

And Braedan is suddenly Mister Independent. I’ve long worried that our generation of parents hovers too much, organizing our child’s every moment, tracking our child’s every move. So I’ve been pushing him since last spring: “Just go, Brady, just ride your bike down the street, just find someone,” when he’s bored. And finally, he’s doing it. Well, not quite riding down the street and befriending strangers (even I might warn against that), but heading off with friends to play at the school playground, without Mom but with little brother in tow.

Last week, I needed to pick up Austin when Braedan was home with a friend and he said, “Aaaaww, do we have to go? Why can’t we just stay here?” I thought about it for all of 30 seconds and said, “Ok, fine. Here’s my cell number, stay right here in your room and play.” I was back within nine minutes and they were — of course — totally fine.  He’s still only seven, but I was babysitting by the beginning of third grade, one small year ahead of where he is now. (I know that sounds crazy, but tell them, Caryl, it’s true.)

Tomorrow he and the neighbor girl will walk to school unattended. That may not seem like a big deal to those of us who walked without parents from kindergarten on, but not many people seem to do it anymore. I think it’s such a good and important way to gain independence. More than just the walking safely — it’s being able to manage yourself enough to make it there on time. I don’t remember any of us ever wearing watches as we walked our three-quarters of a mile four times a day (those were the days when we still went home for lunch), but we were never late. We knew how much we could play along the way and still make it on time. We were in charge.

So I am thrilled with these recent developments. Not that I want my beautiful babies to grow up too fast, but I do want them to be confident enough in themselves and capable enough to do things on their own. I want them to feel that sense of efficacy — that oh-so-important “I can actually do this” feeling of success.

It’s their time.

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.

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