Sunday, September 4, 2011

Just Living Life For Awhile

We did something completely out of character for us—we went on an eco-boat tour. 
It’s something we’ve wanted to do since we moved to the Mississippi River area last year but it lacked an element of control that we’ve never quite been able to forgo given the kids’ medical issues and Caden’s autism.

To really understand this I guess you need some background. When Caden was 3 months old we needed to go to Texas for a work conference.  We could have flown and most sane people would have but we worried about how he’d handle the trip (no medical issues yet, just our first major trip with our new baby boy) so we drove from Ohio to Texas. A few years later we needed to go to South Dakota for Dan’s research. We contemplated flying but by this point we knew both kiddos had immune issues and we were waiting on Caden’s autism diagnosis. What we knew for sure was that we needed to be prepared for a whole host of medical challenges, that we needed access to particular foods (very poor Native American reservations can be challenging for vegetarians with specific dietary needs), and that life would be easier if we had as many things as possible that were familiar to Caden. So you guessed it, we drove from Ohio to South Dakota and honestly all four of us sang the happy happy song when we hit our drive way upon returning home! And the examples continue.

Last year we actually took a step forward by purchasing seats on the bus headed to the cheerleading competition in Omaha. We convinced ourselves that the in-bus movies, bathroom, electronics, and ability to pack snacks would make the trip doable. And after all of the traveling we had been doing, having someone else drive in the potentially winter weather sounded amazing. Then a few days before we started the what if process. What if one of the kids got sick and we needed a hospital stop. What if Caden couldn’t handle the bus, melted down, and spent hundreds of miles screaming and crying. The trip to Omaha went smoothly but we went in our suv instead of the bus.

So while the eco-boat tour isn’t exactly a road trip it does require committing to a 2 hour block of time in which our kids don’t get sick and autism doesn’t strike.  There isn’t a quiet space in case the crowd becomes overwhelming, there isn’t a dark place if the sun becomes too much, there isn’t a place to lay down if anyone gets sick, there isn’t an exit if the trip just plain doesn’t work out. We got to the dock this morning only to learn the 10:30 tour was sold out so we made a reservation for 2---now that’s not new for us (see the above paid trip to Omaha). But we went back at 1:30 so that we’d have choices in seats and we got on the boat.  And we stayed on the boat—don’t get me wrong when the boat started to pull away I felt a little panicked and thought of the blankie and pacifier that we deliberately didn’t bring, the Zofran that I had forgotten (I packed albuterol and Benadryl), and so on but then I caught the view. The sun was coming in on our side of the boat and Ryley was looking out at the water on my left and Caden was absolutely glowing on my right and honestly the world was right for a few minutes. Actually it was pretty right for about 2 hours and we just enjoyed the eagles, the “cool” boats that sped past us, and the waves, and the wind. For 2 hours we didn’t talk about immune deficiencies or autism and we didn’t need to apologize or explain anything to anyone around us.  I think we blended in and I have to say it was pretty awesome to just be a plain ole typical family out for a Sunday boat ride living life.

School starts on Tuesday and I know the drama surrounding IEPs and 504s, morning alarms, packed lunches, homework, and hurt feelings will soon begin. Today will become a distant memory swept up in day-to-day life but I’m going to hold on to the feeling of just living life for as long as I can.  When I close my eyes I want to remember how happy and healthy both kids were, how amazing the wind felt on my face, and how awesome it was to just be living a normal life for 2 hours.