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Day 129, Step 3092

We’re on Day 129 and just took Step 3092.

Now, I realize that might take a bit of explanation – at least the Steps part.  You see, all the experts, be it medical, behavioral, educational, or otherwise, are very quick to point out that the autism recovery journey is a marathon and not a sprint.  We have to approach it that way or risk an early nervous breakdown when you don’t see improvement from a treatment.  Or, worse yet, there’s some major (or even minor) setback that happens. 

We’re only on Day 129 and Step 3092 and have already had things that didn’t seem to work and setbacks that have brought us to tears.  I try to keep thinking positively, knowing we’re just at the start of this road, but sometimes it’s, quite frankly, really damn hard.  The last few days have been one of those times. 

One of Sam’s major issues – one that we’re still wondering just how much it contributes to everything else – is with his gut.  It’s terribly common with kids with autism, and just plain terrible to deal with (not to mention often awfully gross).  So, after several early doctor visits and trips to the ER for constipation, we got a referral last November for him to see a pediatric gastroenterologist here in Indy.  His appointment (that was actually with the doc’s nurse practitioner) was May 17th.  (Have I mentioned how long the wait is to see many of these specialists?  All you new high school and college grads – I encourage you to become doctors that treat autism.  There’s a heck of a market, and boy is it growing.)

As a result of that appointment, the poor little guy was scheduled for an endoscopy and colonoscopy last Thursday.  We’d been through an endoscopy with big brother Ben not quite a year ago and were prepared for what that meant … but the whole colonoscopy thing was another story.  To shorten the long (and icky) story, the prep didn’t really work and the doc had to take care of things from there.  Result – we have to start him on a course of laxatives and softeners to try to get him to learn that it doesn’t hurt to go.  That’s where the fun’s been since Thursday.

It’s literally been a rare hour (absent sleeping) that we haven’t heard, “Have to go potty!” no less often than every 10 minutes.  And for Sam right now, “have to go” means “already went.”  And more than once, I’ve been on the edge of tears (and sanity), wondering how we’re going to get through this one.

And then I remember – it’s just the start of our marathon. 

So, to pass all the free time between potty visits, I starting thinking about what this marathon would look like if I were to try to quantify it.  After a bunch of different options I think I found the one that makes the most sense to me.  I warn you, analytical math is not my strong suit, so just try to follow along here with me…

A marathon is 42.195 km (as defined by the International Association of Athletics Federation (IAAF), the Association of International Marathons and Distance Races (AIMS), and the Road Running Technical Council of USA Track & Field (RRTC/USATF)).  That equates to 26.21875 miles, or 138,435 feet.  Various websites estimate that the length of the average step is about 2 ½ feet.  Rounding down to include the steps of our kids (and to account for the many days that we’re just shuffling along), that gives us about 69,218 steps in a marathon.  Now, divide the steps by 365 days in a year and then 24 hours in each day, that gives us about 7.9015 years, or 2886 days (accounting for a couple of leap years) if each hour counts as a step in this journey.

We received Sam’s autism diagnosis at just about 2:00 p.m. on January 27, 2011.  As I sat down to write tonight, it was just past 8:00 (and Sam was peacefully sleeping).  Using my calculations – a stretch that they may be – that makes us on Day 129 of 2886, and Step 3092 of 69,218.  It’s been a very trying few days.  But putting it in perspective of how early we are in our marathon, I have to appreciate how far we’ve already come and not stress so much over how rough this little patch has been.  I’m sure there’ll be more ups and downs, and many more days and steps.  And maybe it’s even just our first marathon before the journey is done.  But, we’ll keep going – ‘cause we just have to.

So … for my new friends on this same journey, in your own marathons… what day are you on?  How many steps have you taken?  Each hour and day that passes is one more toward the finish line…

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