I love your brain

It feels strange to consider mid-August the end of the summer but school for us starts next week and that is the traditional benchmark for the end of summer. This last week is a bit dull for the boy. He doesn’t have a camp or play dates scheduled and his friends all seem to be on floating schedules this week like him. He’s not a happy camper. Routine boy is disgruntled by free flow, plan free, endless days. He’s a kid who respects routine. He likes knowing where he’ll be each day and what’s expected of him.

School breaks throw him off. He can have fabulous plans and thoroughly enjoy his time off but at the end of the day, he much prefers the routine of school. Everyone does their respective weekday thing. He goes to school and after care/homework club, his dad and I both go to work, and most nights we all converge on the house within a couple of hours of one another and have dinner and a little TV together and chat about our days or the next. He likes it like that. It keeps him even keeled.

Besides our little road trip last month, this week is the most topsy turvy of the summer weeks. Unlike the road trip, which he enjoyed (excepting that he has made it clear that he would prefer future vacations to include a friend, grandparent, or meeting another family so that he doesn’t have to vacation just with his parents), this week is mostly just him and a caregiver. He adores her and they’ll do this and that and maybe run around town a bit but not knowing what is going to happen makes him a little nutty.

I thought about scrambling around to find things for them to do and people for them to see but it seemed like too much effort and in the back of my mind I thought it would be good for him to break free of the routine and do a little flying by the seat of his pants. Not sure it’s working out but it’s only Tuesday…so we’ll see.

We just returned from a five day road trip…We planned to meet some friends who were going to visit the Grand Canyon, driving from Boston.  We decided to do a couple of nights in Las Vegas on the way and then hook up with them in Williams, AZ to take the train to the Canyon together.   It was a great trip and the Canyon is spectacular.

But the stress leading up to the trip was palatable.  There are so many unknown factors that we stress over when making travel plans, even just to a new friend’s house, that sometimes it feels easier not to go to new places.  We never make that choice but the pre-travel unknowns definitely take their toll.  Accessibility, where and when to feed Cole, where and how to attend to his personal needs, all the things that make our travel a little harder, and a little different.

Turns out we’re a capable team, trio.  Yes, we have to scope everything out and plan for the worse, but when put to task, everything worked out fine.  We spent two fun filled days in Las Vegas, frolicking on the Lazy River  and enjoying some fab meals.  We traveled to Arizona, road a train and explored the Grand Canyon and then power drove back to California all without incident, embarrassment (well, Cole might have something to say about that – it turns out that our almost teen would prefer to vacation in future with a friend in tow. The parents are not satisfying enough!  Even the addition of a grandma is preferred to just the parents – how utterly typical of him.)

The Grand Canyon was amazing and even more spectacular than you’d imagine even having seen pictures, flown over it…It’s breathtaking.  We explored during day light and then returned for sunrise the next day.  Definitely an experience.  The whole trip was a great experience and it showed us that with some foresight and planning, anything is possible and there’s no reason not to heed adventure with the boy.  We can make anything work.

His dream is Paris.  I’m determined to make that a reality…maybe for middle school graduation!

I have a confession to make. I can’t seem to get my son to sleep in his own bed. He’s done it successfully for long bouts of time throughout his twelve years but he’s once again managed to wrangle the coveted spot next to me and seems determined to stay there. Despite his considerable desire for independence in other aspects of his life, this comfort is one he refuses to give up. At least without a big fight…

I don’t have the bandwidth to fight it. I chose my battles as wisely as I can and I know this is one where if he digs his feet in deep enough, I’ll lose. I know somewhere in my mind that he’ll grow out of it again too. I know he wants to be near me because my work hours are such that he sees very little of me during the week, and he misses it. I miss it too which may contribute to why I’m not fighting this right now.

We talk about it often and he looks at me with amusement when I tell him that soon he’ll be moving back to his room. He looks admiringly around his room, which was recently redone for him so that ‘s a bit more grown up and very tranquil. He likes his room. Just not sleeping there. Perhaps just not sleeping there without me.

I’m honestly not sure what comfort he gains from sleeping with me. Most nights he sleeps peacefully through the night and wakes for a quick morning cuddle, something we used to do his in room when I’d come wake him up in the mornings. Those nights where he’s restless or sleepless, I’m up with him, but that too happens wherever he’s sleeping.

Part of me wonders if it’s simply that he’s got my attention if we’re together, alone, and he’ll take it however it comes, which makes me a little sad.

Traveling is not always easy for any family and with ours it presents odd challenges in that my son is in a wheelchair, needs certain privacies for his personal business, and is fed through a g-tube.  Highly challenging on long flights, less so on long road trips, but I’ll never shy away from the chance to share new places, adventures and experiences with him.  Organization is essential because some things he needs are not easily procured on the road or in another country.  We ship things when we visit my in-laws for example, and I make big lists when we hit the road.  We’re heading for the Grand Canyon next week.  I feel prepared which helps me to actually relax!  Here’s my packing list:

  2014 SUMMER ROAD TRIP – PACKING LIST

DOCUMENTS & ESSENTIALS
o   AAA Card
o   Cash
o   Credit Cards
o   Driver’s Licenses
o   Hotel Reservations
o   Keys
o   Map
o   Proof of Insurance
o   Train Reservations
o   ___________________________
o   ___________________________
o   ___________________________

TECHNOLOGY
o   Canon Camera & Battery Charger
o   Car Chargers
o   Extra Camera Batteries
o   iPads
o   iPhones
o   Jambox Mini
o   Laptop Cords/Chargers
o   Laptops
o   Memory Cards
o   Nook & Charger
o   Point & Shoot
o   Thumb Drive
o   Wall Chargers
o   _________________________
o   _________________________
o   _________________________

ENTERTAINMENT
o   Books & Magazines
o   DVDs
o   Pens & Markers
o   Playing Cards
o   Playlists
o   Stamps
o   Stickers
o   Travel Games
o   Travel Journal
o   _________________________
o   _________________________
o   _________________________

TOILETRIES

o   Cetaphil wipes
o   Conditioner
o   Deodorant
o   Eye Glasses Wipes
o   Face Scrub
o   Fragrance
o   Hair paste
o   Hairbrush
o   Kleenex
o   Lip Balm
o   Lotion
o   Make-up
o   Moisturizer
o   Nail Care
o   Razors
o   Shampoo
o   Soap or Body Wash
o   Toothbrushes
o   Toothpaste
o   Washcloth
o   __________________________
o   __________________________
o   __________________________
o   __________________________

FIRST AID & MEDS

o   Aleve
o   Anti-itch cream
o   Band-Aids
o   Blister Care
o   Children’s Benadryl
o   Children’s Tylenol
o   Disinfecting wipes
o   Neosporin
o   Prescriptions
o   Sun Screen
o   Tweezers
o   Tylenol
o   Vitamins
o   _________________________
o   _________________________

COLE’S SUPPLIES

o   Bags – 3
o   Changing Pad
o   Diaps
o   Extra Mic-Key Button
o   Extra Extension Sets
o   Formula – 24
o   Lap Towels
o   Lube
o   Pads
o   Tubes
o   Tummy Towels
o   Wipes
o   _________________________
o   _________________________
o   _________________________

COLE’S CLOTHES

o   Hat
o   Jeans – 1 pair
o   PJ’s – 3
o   Rash guard – 2
o   Shoes – Sneakers & Toms
o   Shorts – 8 pairs
o   Socks – 6 pairs
o   Sweat pants – 3 pairs
o   Sweat shirt – 2
o   Swimsuit – 2
o   T-Shirts (Long sleeve) – 4
o   T-Shirts (Short sleeve) – 8
o   Undershirts – 6
o   Undies – 6

DAN’S CLOTHES

o   Bathing Suit – 2
o   Hat(s)
o   Jeans
o   Pj’s
o   Rash Guard – 2
o   Shoes
o   Shorts
o   Socks
o   Sweater
o   Sweatshirt
o   T-Shirts (Long Sleeve)
o   T-Shirts (Short Sleeve)
o   Undies

CYN’S CLOTHES

o   Chinos – 1
o   Cover-up
o   Hat(s)
o   Jeans – 1
o   Lingerie
o   PJ’s
o   Rash guard – 2
o   Shoes – Sneakers, Flats, Sandals
o   Shorts – 2
o   Skirt – 1
o   Sweater
o   Sweats
o   Swimsuit -2
o   T-Shirts – 4
o   Tanks
o   Umbrella

o   Umbrella