Monday, May 5, 2014

How We Do It...

We have not been on vacation with Max since 2008.  When we landed back in Colorado after a year of traveling hither and yon, we were a bit broken to the idea of being able to travel again.  On that last plane ride, I had nowhere to change Max's pants.  The flight attendant told us to lay him across the toilet seat and change him.  It broke me.  When we moved back to Colorado, we haven't left as a family since.  

This summer, I want to change that.  I want to be able to see family.  I want to take Max to see the places he's learning about.  I want us to go on family trips before Abbey is off to college.  So, we're taking this week as a sort of trial to see if we can do it.  

Yesterday, as I was packing Max's supplies for the week and thought of my friend Elizabeth's "How we do it" series on her blog.  She gives us snippets into her life with her adult daughter with epilepsy.

"How do you do it?"  This is something families with children (and adult children) with significant needs hear all the time.  Like, ALL the time.  The answer is always some version of the same..."I don't know; we just do it."

So, yesterday as I started creating the piles and piles of Max's supplies to pack up and take on our vacation**,  I thought I should take pictures and show a snippet of how we do it.  And show myself that we CAN do it.

A front view, everything to the left and the two large trash bags are for Max.

A side view.  10 packs of briefs, 4 packs of wipes, a box of gloves, hand sanitizer, face masks, 2 packs of paper towels, the nurse's charting book, his emergency hospital bag, wedges for his bed so he can sleep at an incline, diffuser for his essential oils, suction machine, ipod with speakers for his ocean sounds, mat to give him a bed bath on, talker computer with switches, fan, all his pillows, comforter, sheets and bed pads, sling for his lift, and quilts for his chair. 

That's right, we had to bring his chair.  He sits most comfortably in this chair.  We had to transport him in his wheelchair.  So we have that too.  This is the only casualty of the move, big brown chair got a gash in it in the move...I'm going to have to figure out how to patch it up.
 That was all the first trip to the suite.  Steve and Abbey took the load and unpacked to make room for the rest of it, plus me and Max.

This load is just his food for the week.  Well, food and medicine.  5 grocery bags.  A cooler full, and another bag carrying his blender and measuring cups.

This is me.  Mostly me, anyway. Max also takes up the top quarter of that bag with his clothes. 
So yes, we CAN do it.  Just HOW are we going to do it? Do we need all these things for a vacation? Probably.  That's frustrating, simply because I have no idea how we would travel like this.  We certainly couldn't fly with all that. We would need an RV to carry it all.  It all goes back to we just need some millionaire to bequeath a jet to Max.  One that his van would also fit in so when we arrive to our destination we could just drive him around in.  Hey....a momma can dream, can't she?

**I keep telling Max it's a vacation to stay in a hotel for a week while we do construction in his bedroom and bathroom.

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